Eligible patients and consumers organisations

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The European Medicines Agency (EMA) engages with a network of over thirty-five eligible organisations, ensuring that the needs and concerns of a wide range of patients and consumers are represented via direct contact with the Agency.

These organisations are not-for-profit, in most cases have a European Union-wide mandate, and include:

  • umbrella organisations encompassing a number of smaller or national organisations;
  • organisations with a focus on a specific area.

Eligible organisations receive targeted EMA communications and consultations and frequently assist in the identification of experts for product-specific matters.

All of the listed organisations have been evaluated and confirmed to fulfil the eligibility criteria for working with EMA. For more information on the eligibility criteria and engaging with EMA representing a patients' or consumers' organisation, see Getting involved.

Please note that becoming an eligible organisation does not automatically grant membership to the Patients' and Consumers' Working Party (PCWP). The process of becoming a member of the PCWP is outlined in its mandate, available on the working party's webpage.

List of eligible organisations


 

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AGE Platform Europe (AGE)

AGE Platform Europe (AGE) was set up in January 2001 following a process of discussion on how to improve and strengthen cooperation between older people’s organisations at a European Union (EU) level.

Representativity

AGE has 160 member organisations representing 30 million people aged 50 years and over.

AGE aims to voice and promote the interests of the 150 million inhabitants aged 50 years and over.

Vision

AGE’s vision is of a European society where individuals of all ages enjoy equal rights in terms of living conditions, economic situation, participation as citizens and access to fundamental goods and services.

Mission and objectives

AGE aims to give a voice to older people in the EU policy debates through the active participation of their representative organisations at EU, national, regional and local levels so as to influence EU policy development.

AGE works on age discrimination, the employment of older workers, social protection and pension, social inclusion, health, new technologies and accessibility to the transport and build environment. AGE participates actively in the preparation of the European Year 2012 on active ageing and solidarity between generations.

Last evaluation: November 2016

Alzheimer Europe (AE)

Alzheimer Europe (AE) was founded in 1990 and represents the interests of people with dementia and their carers in collaboration with its national member organisations.

Representativity

AE is the umbrella organisation of 31 national Alzheimer associations from 27 European countries.

Vision

AE hopes to make dementia a European and national public-health priority.

Mission and objectives

AE's mission is:

  • to change perceptions, policy and practice in order to improve access to treatment options and care services for people with dementia and their carers.

To achieve its mission and its objectives, AE:

  • represents the interests of people with dementia and their carers;
  • involves and supports its national member organisations;
  • promotes information exchange between national Alzheimer associations and other stakeholders;
  • carries out comparative surveys across countries;
  • develops policies;
  • networks with other relevant European organisations.

Last evaluation: December 2016

DEBRA International

Dystrophic Epidermolysis Bullosa Research Association (DEBRA) International is the international umbrella patient organisation of national patient organisations representing people living with epidermolysis bullosa (EB), a rare genetic condition. DEBRA International has a strong European section which is active in European forums such as the European Organisation for Rare Diseases (EURORDIS) and the European Disability Forum.

Representativity

DEBRA International has member groups, or associated groups in the process of formation, in 40 countries, all of which are the national representative patient organisations of people with EB.

Vision

DEBRA International’s vision is equal access to high quality, specialist and appropriate healthcare for all people with EB throughout the world, including the European Union.

Mission and objectives

DEBRA's mission is:

  • to promote the well-being of people with EB and to take any actions necessary in pursuance of this at international level.

Its objectives include:

  • stimulating collaboration and exchange between people with EB and their organisations;
  • collaborating with national governments and national and international organisations to defend the interests of people living with EB;
  • promoting and coordinating research;
  • providing services for the benefit of people with EB;
  • raising public awareness.

Last evaluation: January 2016

European AIDS Treatment Group (EATG)

The European AIDS Treatment Group (EATG) was founded in 1992 and is a pan-European non-for-profit organisation composed of members advocating for HIV / AIDS treatment and good quality of life.

Representativity

EATG is composed of 100 members belonging to 30 European countries, plus three supporting members from the United States and Canada, representing the community of people living with HIV.

Vision

EATG is patient-centred, achieving its mission through scientific and social training, position papers and participating in international research teams and boards aimed at developing best clinical practice and the equitable standard of care in HIV and co-infections throughout the EU.

Mission and objectives

EATG's mission is:

  • to achieve the fastest possible access to state-of-the-art medical products, devices and diagnostic tests that prevent or treat HIV infection or improve the quality of life of people living with HIV or who are at risk of HIV infection.

EATG's pan-European membership also works with European and national institutions to bring HIV issues to the attention of the governments in partnership with policymakers, academics, researchers and industry.

Last evaluation: December 2016

European Cancer Patient Coalition (ECPC)

The European Cancer Patient Coalition (ECPC) was founded in 2003 and it is committed to improving the prevention screening, early diagnosis and best treatment of cancer, reducing disparity and inequality across the EU.

Representativity

Currently ECPC has over 200 members from across the 27 EU Member States, representing the most common cancers such as lung, breast, colon and prostate as well as the rarer cancers.

Vision

ECPC’s vision is a world where the burden of cancer is successfully reduced and where all patients have access to high-quality, patient-centred, equitable treatment and care.

Mission and objectives

ECPC's mission is:

  • to ensure that the rights of cancer patients are upheld and enforced;
  • to increase the representation and influence of cancer patients at the highest level of decision-making both nationally and Europe-wide, in all areas that affect their health;
  • to empower patients to obtain certain and timely access to appropriate and accurate prevention, screening, diagnosis, treatment and care, including psychosocial care;
  • to promote the advancement of research into cancer including all applicable information on well designed clinical trials.

Last evaluation: November 2016

European Consumers' Organisation (BEUC)

The European Consumers’ Organisation (BEUC) was founded in 1962. It represents the views of its members and lobbies for the interests of European consumers to be placed at the heart of EU policymaking.

Representativity

BEUC represents 44 reputed, independent national consumer organisations from 30 European countries, including the EU, the European Economic Area and applicant countries.

Vision

BEUC's vision is to promote consumer interests all over the EU. In the health field its vision is to 'put consumers’ health first: promote high quality information and healthcare for all'.

Mission and objectives

BEUC promotes consumer interests in eight areas:

  • health;
  • food;
  • energy;
  • contractual rights;
  • the digital world;
  • product safety;
  • financial services;
  • redress.

In the health area its main objectives are:

  • to secure the rational use of medicines and allow consumers to make informed choices;
  • to guarantee that consumers benefit from safe and innovative medicines;
  • to ensure that consumers have access to high-quality healthcare in all EU Member States.

Last evaluation: December 2016

European Federation of Allergy and Airways Diseases Patients' Associations (EFA)

The European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) was founded in 1991. It is the umbrella association of European allergy, asthma and chronic-obstructive-pulmonary-disease (COPD) patient associations in countries that represents its members at a European level.

Representativity

EFA has 35 member organisations in 22 European countries. Three represent COPD exclusively, three asthma, four allergy, nine both allergy and asthma and seven asthma and COPD. Eight of the organisations represent all three conditions.

Vision

EFA is the leading reference point for people with allergy, asthma and COPD. EFA is dedicated to making Europe a place where people with allergy, asthma and COPD:

  • have the right to best quality of care and safe environment;
  • live uncompromised lives;
  • are actively involved in all decisions influencing their health.

Mission and objectives

EFA's mission is:

  • EFA is aiming to be a powerful European network of allergy, asthma and COPD patients organisations that:
    • advocates at EU level the needs of people with allergy, asthma and COPD;
    • values all members equally;
    • implements best practice;
    • creates patient driven projects;
    • cooperates with healthcare professionals, scientists and other stakeholders / non-governmental organisations (NGOs).

Its objectives are:

For member organisations:

  • to actively communicate with member organisations identifying their needs;
  • to develop projects to meet these needs.

For patients:

  • to provide transparent access to information and educational tools in patient-friendly language;
  • to provide opportunities to participate actively in projects.

For healthcare professionals and scientists:

  • to facilitate communication in patient-friendly language focusing on patient needs;
  • to develop and promotes long-term partnership on equal level;
  • to ensure active participation of patients in all decisions regarding their disease.

For policymakers:

  • to act as a liaison between people with allergy, asthma and COPD and EU policymakers;
  • to negotiate to raise standards of care, environment and research;
  • to communicate and update about patient needs.

For NGOs and industry:

  • to develop and promote long-term partnership;
  • to ensure well defined conditions of partnership.

Last evaluation: February 2017

European Foundation for the Care of Newborn Infants (EFCNI)

The European Foundation for the Care of Newborn Infants (EFCNI) was founded in 2008 and is the first pan-European organisation to represent the interests of preterm and newborn infants and their families.

Representativity

EFCNI represents more than 40 national parent organisations in Europe and worldwide.

Vision

EFCNI’s vision is to ensure the best start in life of every baby born.

Mission and objectives

EFCNI provides a platform for all those involved in pregnancy, childbirth, newborn health and continuing care:

  • Establishing a powerful network.
    • Supporting national parents’ organisations.
    • Fostering information exchange and best-practice sharing across national borders.
    • Partnering with parents, healthcare professionals, policymakers and other stakeholders.
  • Implementing high-quality treatment and care.
    • Providing easy-to-understand and widely accessible information for those involved.
    • Promoting research and providing research support from the patient‘s perspective to improve prevention, treatment and care, as well as outcomes.
    • Enabling social and financial support for the families concerned.
    • Facilitating medical, psychological and socio-pedagogical support for parents concerned.
  • Generating public awareness.
    • Constructive dialogue with political decision-makers and opinion-leaders.
    • Providing a platform for discussion on ethical issues on preterm birth, its prevention, the best possible treatment and care of preterm and newborn infants and effective continuing care.
    • Targeted public relations and media work, e.g. as co-founder of World Prematurity Day or leader of various campaigns.

Last evaluation: June 2016

European Federation of Neurological Associations (EFNA)

The European Federation of Neurological Associations (EFNA) was founded in 2001. Its focus is the spectrum of neurological illnesses. As the umbrella organisation for neurological patient organisations across Europe, it addresses generic neurological issues with a single voice.

Representativity

Members and affiliates range from large organisations (e.g. Stroke Alliance for Europe, the European Parkinson’s Disease Association and the European Headache Alliance) to small (e.g. Euro‚ÄĎAtaxia, the European Dystonia Federation and the European Network for Research in Alternating Hemiplegia).

Vision

EFNA aims to provide maximum opportunities for people living with neurological conditions and to work towards relieving the immense and escalating social and economic burden on patients with neurological disorders, their carers and society.

Mission and objectives

EFNA achieves its objectives and organises activities that contribute to the advancement of neurology and related areas through:

Last evaluation: November 2016

European Gaucher Alliance (EGA)

The European Gaucher Alliance (EGA) began in 1994 helping develop patient organisations and support patients in Eastern Europe access treatment. In 2008, it became a formal organisation with a membership of 32 members.

Representation

EGA has an elected board of nine members, all family members. It has 29 member countries (Europe) and three associate (non-Europe). EGA serves Gaucher patients globally.

Vision

EGA seeks equal access to high-quality clinical management and access to treatment for all Gaucher patients and support for their families and development of therapies for unmet need.

Mission and objectives

  • To be an umbrella organisation that supports and represents national Gaucher associations.
  • To collect and disseminate information.
  • To provide support and guidance to those representing Gaucher patients.
  • To represent the interests of Gaucher patients and ensure the voice of the Gaucher patient is heard.
  • To encourage and promote scientific and medical research, and improve therapeutic approaches and quality-of-life issues.
  • To be a forum considering ethical issues.
  • To ensure appropriate treatment is available to all patients with Gaucher disease who require treatment.

Last evaluation: December 2016

Patients Network for Medical Research and Health (EGAN)

Introduction

The Patients Network for Medical Research and Health (EGAN) is the European network of national and regional alliances and European disease-specific organisations for patients with genetic disorders and other serious medical needs. EGAN promotes (patient engagement in) research, the development of services and contributes to patient-centred European health policy.

Representativity

EGAN’s membership includes several national (United Kingdom and the Netherlands) and regional (central and eastern Europe) genetic alliances, and about 15 disease-specific European patient organisations for genetic diseases.

Vision

EGAN’s vision is that sustained patient partnership in genetic and biomedical research, and in research and health policy, will contribute to the fast development, quality, patient-centeredness and availability of therapies for people with genetic and other serious disorders.

Mission and objectives

EGAN’s mission is to work for a patient voice in research and health policy and to seek a world in which genetic and other serious diseases are understood, effectively treated, prevented and the people affected supported.

EGAN’s objective is to articulate a clear, patient-focused perspective on genetic and (bio)medical issues and their ethical, legal, psychosocial and cultural implications in the European political, scientific and industrial arena.

Last evaluation: December 2016

European Haemophilia Consortium (EHC)

The European Haemophilia Consortium (EHC) is a patient-led, non-governmental, non-profit organisation dedicated to improving the quality of life of people with haemophilia and other rare bleeding disorders throughout Europe.

Representativity

The EHC represents 45 national patient organisations

for haemophilia, von Willebrand Disease and other rare bleeding disorders from 27 EU Member States and most Council of Europe countries.

Vision

The EHC strives to ensure that all people with haemophilia and other rare bleeding disorders in Europe are diagnosed and receive safe and adequate treatment and care, enabling improved quality of life healthy, active and productive lives.

Mission and objectives

The EHC’s mission is to:

  • Improve quality of life of people living with rare bleeding disorders;
  • Improve diagnostic and treatment facilities;
  • Ensure adequate supply of – and access to – safe factor concentrates;
  • Promote patients’ rights and raise ethical issues;
  • Follow and influence developments in European health policy; Stimulate research in all fields related to haemophilia and other rare bleeding disorders.

Last evaluation: November 2016

European Heart Network (EHN)

The European Heart Network (EHN) was founded in 1992. It is a Brussels-based alliance linking heart foundations and non-governmental organisations committed to the prevention of cardiovascular disease (CVD), including coronary heart disease and stroke.

Representativity

EHN has 31 member organisations in 26 countries across Europe, the majority of which represent patients and work to promote patients’ interests.

Vision

EHN’s vision is that every child born in this millennium has the right to live until the age of 65 years without suffering from CVD.

Mission and objectives

EHN plays a leading role in the prevention and reduction of CVD with the aim that it will cease to be a major cause of premature death and disability throughout Europe.

EHN does this through:

  • influencing European policymakers in order to promote a heart-healthy lifestyle;
  • creating and nurturing ties between organisations concerned with CVD prevention;
  • gathering and disseminating information relevant to CVD prevention;
  • monitoring EU policy;
  • encouraging support for CVD research.

Last evaluation: November 2016

European Institute of Women’s Health (EIWH)

The European Institute of Women’s Health (EIWH) was founded in 1996. It is a non-governmental organisation set up to promote gender equity in public health, research and social policies across the Europe.

Representativity

EIWH's membership of 80 organisations from across the EU comprises a mix of disease-specific patient organisations, professional and women’s organisations, health non-governmental organisations (NGOs) and public-health researchers.

Vision

EIWH's vision is to achieving the highest standard of health and well-being for all, where women and men have equal opportunities and access of quality healthcare across the EU.

Mission and objectives

EIWH's vision is:

  • to promote health throughout the lifespan of women, men and children;
  • to ensure quality and equity in health policy, research, treatment and care;
  • to draw policymakers' attention to the obstacles that minority and socio-economically disadvantaged groups face in obtaining a desirable health status;
  • to influence the social construct that enables and empowers individuals to play an active part in their own health;
  • to campaign for gender-specific biomedical and socio-economic research to ensure access to quality treatment and care for women.

Last evaluation: November 2016

European Lung Foundation (ELF)

The European Lung Foundation (ELF) was founded by the European Respiratory Society (ERS) with the aim of bringing together patients and the public with respiratory professionals to positively influence lung health.

Representativity

ELF works with a network of over 150 lung health patient organisations across Europe, empowering them and patients across Europe to contribute the patients’ perspective at the European level.

Vision

The vision of the ELF is to raise awareness about lung health and disease, and that patients and the public are able to contribute to the future of respiratory healthcare.

Mission and objectives

ELF works to ensure that people with lung diseases and the general public have the opportunity to influence respiratory research and guidelines at the European level. ELF also communicates the latest lung science, and the educational and research activities of the ERS to those outside the field of lung health. ELF aims to strengthen and grow its network of patient organisations and work together to further patient input in ERS activities.

Last evaluation: November 2016

European Liver Patient Association (ELPA)

The European Liver Patient Association (ELPA) was founded in 2005. It promotes and advocates for better prevention, screening, early diagnosis and best treatment of patients with hepatitis and liver disease.

Representativity

ELPA represents patients with hepatitis and liver disease and consists of 21 national liver patient associations from 17 countries from all over Europe and one non-European country (Egypt).

Vision

ELPA’s vision is for early diagnosis of patients with hepatitis and liver disease across Europe, having access to high-quality care and treatment with disparity reduced.

Mission and objectives

ELPA's aim is to promote the interests of people with liver disease and in particular:

  • to promote awareness and prevention;
  • to address the low profile of liver disease as compared to other areas of medicine;
  • to work with professional bodies such as the European Association for the Study of the Liver and the European Medicines Agency, and with the EU, to ensure that the prevention, early diagnosis and care of liver diseases are promoted across Europe and harmonised with a view to eliminating health inequalities.

Last evaluation: December 2016

European Multiple Sclerosis Platform (EMSP)

The European Multiple Sclerosis Platform (EMSP) was founded in 1989. It serves as an umbrella organisation for multiple-sclerosis (MS) patient organisations in Europe and represents the interests of more than 600,000 patients with MS in the fields of public health and social issues.

Representativity

At present, EMSP has 38 national members (MS societies) from all over the continent. EMSP’s member organisations are active as patient self-help groups, as patient advocates and as promoters of MS research.

Vision

EMSP’s vision is to ensure the development and implementation of high-quality standards of treatment and support for patients with MS, their families and their carers throughout Europe, to allow them to lead the lives they choose and be recognised as equal members of society.

Mission and objectives

EMSP’s mission is:

  • to exchange and disseminate information relating to multiple sclerosis considering all issues relevant to people affected by MS;
  • to encourage research of all kinds that is relevant to MS through recognised organisations;
  • to promote the development of joint-action programmes with the participation of national MS societies in Europe, aimed at improving the quality of their activities and services;
  • to act as a focal point for liaison with the institutions of the EU, the Council of Europe and other European organisations, in order to study and propose measures to improve the autonomy of handicapped people and promote their full participation in society.

Last evaluation: December 2016

European Network of Fibromyalgia Associations (ENFA)

The European Network of Fibromyalgia Associations (ENFA) was formed from national organisations that realised they had common problems getting fibromyalgia recognised.

Representativity

ENFA has 14 national organisations as members, representing 12 countries. It is estimated that there are 14 million people with fibromyalgia in Europe.

Vision

ENFA's vision is for everyone with fibromyalgia to receive the support and treatment they need to live a useful, fulfilling life.

Mission and objectives

ENFA's mission is:

  • to promote fibromyalgia awareness to politicians, physicians, scientists and the general public to enable effective support and treatment across Europe;
  • to promote awareness so that diagnosis is not delayed;
  • to have guidelines agreed for the treatment of fibromyalgia across Europe;
  • to gain greater recognition of the support needed for people with fibromyalgia.

Last evaluation: December 2016

European Parkinson's Disease Association (EPDA)

The European Parkinson’s Disease Association (EPDA), founded in 1992, is a non-political, non-religious and non-profit-making organisation concerned with the health and welfare of people living with Parkinson’s disease (PD) and their families and carers.

Representativity

EPDA is the only European umbrella organisation for PD. It represents national Parkinson’s organisations in 36 countries across Europe and advocate for the rights and needs of more than 1.2 million people with PD and their families.

Vision

  • EPDA’s vision is to enable a full life with Parkinson’s whilst supporting the search for a cure.

Mission and objectives

In order to make our vision a reality, we aim to become the leading voice for Parkinson’s in Europe by providing innovative leadership, information and resources to: national Parkinson’s organisations, European policymakers, healthcare professionals, people with Parkinson's and their families, treatment industry and the media. We hope to raise the profile of Parkinson’s and enable people living with the disease to be treated effectively and equally throughout Europe.

Last evaluation: February 2017

European Patients' Forum (EPF)

The European Patients’ Forum (EPF) is the umbrella organisation of pan-European patient organisations and national platforms of patient groups active in the field of European public health and health advocacy.

Representativity

EPF unites patient associations from throughout the EU and gives a voice to the 150 million patients that it represents, through its membership of 38 umbrella patient organisations.

Vision

EPF strives for high-quality, equitable, patient-centred healthcare for all patients throughout the EU.

Mission and objectives

EPF’s mission is:

  • to provide a strong and united patient voice to put patients at the centre of EU healthcare policy and programmes.

EPF’s main goals are:

  • equal access to best-quality information and healthcare;
  • meaningful patient involvement and a patient perspective in EU health-related policymaking, programmes and projects;
  • encouraging inclusive, effective and sustainable representative patient organisations and to promote solidarity and unity across the EU patient movement.

Last evaluation: December 2016

European Public Health Alliance (EPHA)

The European Public Health Alliance (EPHA) is the European platform bringing together public-health organisations representing health professionals, patients groups, health promotion and disease-specific non-governmental organisations (NGOs), academic groupings and other health associations.

Representativity

EPHA is comprised of 86 local, national, regional and European NGOs and not-for-profit organisations. EPHA’s member organisations work individually and collectively to promote and protect the health interests of people living in Europe.

Vision

EPHA's vision is of a Europe with universal good health and well-being, where all have access to a sustainable and high quality health system: a Europe whose policies and practices contribute to health, both within and beyond its borders.

Mission and objectives

EPHA's mission is:

  • to bring together the public-health community;
  • to provide thought leadership and facilitate change;
  • to build public-health capacity;
  • to deliver equitable solutions to European public-health challenges;
  • to improve health and reduce health inequalities.

Last evaluation: December 2016

European Prostate Cancer Coalition (Europa Uomo)

The European Prostate Cancer Coalition (Europa Uomo) is the umbrella organisation of prostate patient organisations in Europe. As an umbrella organisation, Europa Uomo has no patients as members. Europa Uomo serves all European patients on an international level to further the case of prostate health.

Representativity

Europa Uomo is only made up of patient-led organisations as members. In the general assembly, each country has one vote only and each country decides on the person to be the voting member. Europa Uomo’s membership is from more than 25 countries.

Vision

A future where no man suffers with or dies from prostate cancer.

Mission and objectives

Europa Uomo's mission is

  • to work for all prostate cancer patients in Europe, under one umbrella, for better treatment, care and quality of life;
  • to support national organiations to deliver services effectively, efficiently and in line with national priorities;
  • to confirm Europa Uomo as the representative European voice of all prostate cancer patients support groups.

Last evaluation: December 2016

European Organisation for Rare Diseases (EURORDIS)

The European Organisation for Rare Diseases (EURORDIS) is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe. EURORDIS was founded in 1997.

Representativity

EURORDIS represents more than 469 rare disease organisations in 47 different countries, including 25 EU Member States. It covers more than 4,000 distinct rare diseases.

Vision

EURORDIS’s vision is:

  • to build a strong pan-European community of patient organisations and people living with rare diseases;
  • to be their voice at the European level;
  • to fight against the impact of rare diseases on their lives.

Mission and objectives

EURORDIS undertakes activities on behalf of its members, notably in favour of:

  • empowering rare-disease patient groups;
  • advocating rare diseases as a public-health issue;
  • raising public awareness on rare diseases, and also that of national and international institutions;
  • improving access to information, treatment, care and support for people living with rare diseases;
  • encouraging good practices in relation to these information, treatment, care and support;
  • promoting scientific and clinical research into rare diseases;
  • developing treatments for rare diseases and orphan drugs;
  • improving quality of life through patient-support, social, welfare and educational services.

Last evaluation: December 2016

Fabry International Network (FIN)

The Fabry International Network (FIN) is a non-governmental, not-for-profit patient-driven alliance of patient organisations and individuals active in the field of Fabry disease, dedicated to improving the quality of life of all people living with Fabry disease, worldwide. FIN was founded in 2005.

Representativity

FIN represents the worldwide Fabry community, including more than 27 Fabry-, lysosomal- or rare-disease organisations, including 18 EU Member States. It covers all of the more than 8000 Fabry-disease patients worldwide.

Vision

FIN’s vision is a world in which every person affected by Fabry disease, has the best quality of life possible through early diagnosis, treatment and cure.

Mission

FIN’s mission is:

  • to be a global, independent network of Fabry-disease patient associations whose purpose is to collaborate, communicate and promote best practice to support those affected by Fabry disease.

Last evaluation: November 2016

Global Alliance for Mental Illness Advocacy Networks (GAMIAN-Europe)

The Global Alliance for Mental Illness Advocacy Networks (GAMIAN-Europe) was established in 1998 as a representative coalition of patient organisations. Putting the patient at the centre of all issues of the EU healthcare debate, the organisation aims to bring together and support the development and policy influencing capacity of local, regional and national organisations active in the field of mental health.

Representativity

GAMIAN-Europe has 50 full member organisations in 31 countries as well as a number of associate members from Canada, South America, South Africa and Australia as well as individual members. Of the 31 countries represented, 25 are EU Member States and two are accession countries. GAMIAN-Europe embraces different diagnosis of mental illnesses.

Vision

GAMIAN-Europe’s vision is high-quality, patient-centred, equitable healthcare for all people experiencing mental illness, and their inclusion throughout Europe.

Mission and objectives

GAMIAN-Europe, a patient-driven pan-European organisation, represents the interests of people affected by mental health illness and advocates for their rights. Its mission is:

  • to act as the voice for patients, both at EU as well as at national level, and demonstrate that this voice is useful and indispensable;
  • to ensure that patients are at the centre of all aspects of healthcare provision;
  • to work to improve the availability, accessibility, and quality of treatment for all mental-health problems.
  • to inform and educate through improvement of the provision, reliability and quality of information on mental-health problems for patients and the general public, and assisting with the improvement the training, education and understanding of mental illness of health and other professionals;
  • to tackle stigma and discrimination by increase awareness, knowledge and understanding of mental-health problems, and helping to reduce stigma, prejudice, and ignorance in relation to mental-health problems and fight discrimination;
  • to work on patients’ rights by focusing on the development and enforcement of rights for people affected by mental-health problems, such as access to appropriate treatment;
  • to work through co-operation, partnerships and capacity building by enabling patient groups to collaborate with health professionals, policymakers, academics, and industry.

Last evaluation: December 2016

Health Action International (HAI)

Health Action International Europe (HAI Europe) is the European office of Health Action International, a non-profit, independent NGO network founded in 1981, working to increase access to essential medicines and improve their rational use through research excellence and evidence-based advocacy.

Representativity

HAI Europe’s membership consists of a wide range of individuals, groups and organisations, from consumer groups, public interest non-governmental organisations, healthcare providers, academics and the media, contributing to the network’s aims with their knowledge and expertise.

Vision

HAI works towards a world in which all people, especially the poor and marginalised, are able to exercise their right to health.

Mission and objectives

HAI’s priority programme embodies the core components of its mission:

  • increased access to essential medicines by ensuring that they are available at affordable prices when treatment is needed, especially for the poor;
  • promotion of the rational use of medicines: all medicines marketed should meet real medical needs, have therapeutic advantages, be acceptably safe, offer value for money and be used rationally;
  • greater democracy and transparency in all aspects of decision-making around pharmaceuticals, by reducing industry secrecy and control over important clinical data, and the including civil society in medicine-related policy.

Last evaluation: December 2016

International Alliance of Patients' Organizations (IAPO)

The International Alliance of Patients’ Organizations (IAPO) is a unique global alliance representing patients of all nationalities across all disease areas and promoting patient-centred healthcare around the world.

Representation

Our members are patients' organizations working at international, regional, national and local levels to represent and support patients, their families and carers. A patient is a person with any chronic disease, illness, syndrome, impairment or disability.

Vision

IAPO's vision is that patients throughout the world are at the centre of healthcare.

Mission and objectives

IAPO's mission is to help build patient-centred healthcare worldwide by:

  • Realising active partnerships with patients' organisations, maximising their impact through capacity building
  • Advocating internationally with a strong patients' voice on relevant aspects of healthcare policy, with the aim of influencing international, regional and national health agendas and policies
  • Building cross-sector alliances and working collaboratively with like-minded medical and health professionals, policy makers, academics, researchers and industry representatives

Last evaluation: November 2016

International Bureau for Epilepsy (IBE)

The International Bureau for Epilepsy (IBE), established in 1961, is an international organisation for epilepsy organisations whose primary purpose is to improve the quality of life of people with epilepsy and those who care for them.

Representativity

IBE provides an international and global platform for the representation of epilepsy in relation to national and international organisations and governments.

Vision

IBE has a vision of the world where everywhere fear and ignorance about epilepsy are replaced by understanding and care.

Mission and objectives

IBE exists to improve the social condition and quality of life of all people with epilepsy and those who care for them.

Last evaluation: December 2016

International Diabetes Federation European Region (IDF Europe)

The European region of the International Diabetes Federation European Region (IDF Europe) is one of the seven regions of IDF. It is a separate legal entity under Belgian law and its office is located in Brussels. IDF Europe is a member of the EU Platform for Action on Diet, Physical Activity and Health and recognised as an official international non-governmental organisation (INGO) of the Council of Europe. Each year IDF Europe organises a general assembly, a meeting called Together we are stronger and a training course for the development of its member associations. Each year it celebrates World Diabetes Day on 14 November.

Representativity

IDF Europe is the umbrella organisation of 62 member associations in 45 countries. These include the former Commonwealth of Independent States and Uzbekistan, Kyrgyzstan, Turkey and Kazakhstan. It uses the World Health Organization region to define the European region.

Vision

IDF Europe promotes diabetes care and prevention, and the search for a cure.

Mission and objectives

IDF Europe is a mixture of patient organisations and organisations of healthcare professionals. It organises Together we are stronger meetings aiming at advocacy and awareness-building for people with diabetes and all those who care about them. The Board and staff of IDF Europe also work with European institutions to bring diabetes and other non-communicable diseases issues to the attention of these institutions in partnership with other diabetes stakeholders.

Last evaluation: April 2017

International Patient Organisation for Primary Immunodeficiencies (IPOPI)

The International Patient Organisation for Primary Immunodeficiencies (IPOPI) was founded in 1992 as a global umbrella organisation for national patient organisations representing primary immunodeficiencies. It has regional interests specifically in Europe.

Representativity

IPOPI currently has 42 national member organisations, the majority of which are based in Europe with further national organisations hoping to become members in the future.

Vision

IPOPI’s vision is improved access to early diagnosis and optimal treatment of the primary immunodeficiencies.

Mission and objectives

IPOPI’s four strategic objectives are:

  • to ensure optimal access to early diagnosis and care;
  • to develop, strengthen and support national member organisations;
  • to enhance the visibility of IPOPI and primary immunodeficiencies globally;
  • to increase efficient governance of a well resourced developing organisation.

Last evaluation: December 2016

Myeloma Patients Europe (MPE)

Myeloma Patients Europe (MPE), a European non-profit organisation of multiple-myeloma patient organisations, is dedicated to raising awareness of multiple myeloma, providing information on the disease, to improving the quality of life of myeloma patients and to stimulating research and accessibility to treatments.

Representativity

MPE represents the voice of European myeloma patients alongside and on behalf of its members:

  • European patient groups / organisations caring for multiple-myeloma patients and their families;
  • individual members (patients, family members or carers).

Vision

MPE’s vision is to be an equal and strong partner in the European healthcare-policy environment by representing the voice of myeloma patients.

Mission and objectives

  • Sharing best practice in shaping appropriate health-related policies and initiatives on both a European and national level.
  • Ensuring myeloma patients across Europe receive timely access to new treatments.
  • Stimulating and promoting patient-centric basic research and clinical trials and to ensure a pipeline of new effective treatments.
  • Building partnerships among its members in order to share experience and expertise.
  • Collaborating on projects to the benefit of the myeloma community.
  • Exchanging information, education and best practice to build sustainability and capacity and facilitate effective group development.
  • Encouraging the growth of new myeloma patient groups throughout Europe, especially in regions and countries where none currently exist.

Last evaluation: March 2016

Pain Alliance Europe (PAE)

Pain Alliance Europe (PAE) is an alliance of European national associations involved with all sorts of chronic-pain patients or where chronic pain is one of the important issues.

Representativity

PAE has 30 members, representing the voice of around 100 million pain sufferers in Europe.

Vision

PAE's vision is to create a Europe in which chronic-pain patients can have access, without any boundaries, to the best possible treatment for them.

Mission and objectives

  • To improve the quality of life of people living with pain in Europe.
  • To have chronic pain recognised as a disease in its own right.
  • To raise awareness of pain in all areas.
  • To promote research into all aspects of pain such as medical, social, psychological and economical.
  • To provide a voice for pain at European level through clinicians, scientists, policymakers and politicians.

Last evaluation: April 2017

SMA Europe (SMAE)

SMA Europe (SMAE) is a non-profit patient and carers- and patients-driven association of patient organisations active in the field of Spinal Muscular Atrophy (SMA), dedicated to supporting the best research and developing an effective therapy. SMA Europe was founded in 2007.

Representativity

SMA Europe represents SMA patients of 7 European countries. These countries (France, Germany, Italy, Netherlands, Spain, Switzerland, UK) have roughly a population of ~ 330 000 000 and about 8 500 patients with SMA.

Vision

Together we will overcome SMA.

Mission and objectives

Our mission is to provide a framework to stimulate collaboration, accelerate translational research pathways in SMA, and promote patient care.

Specific purposes, tasks and objectives of the society are to increase European cooperation to achieve the following objectives:

  • to improve the quality of life of Spinal Muscular Atrophy patients;
  • to promote the interests of SMA patients in European health policy;
  • to raise awareness of Spinal Muscular Atrophy (SMA) with the general public, healthcare practitioners, scientists and industry;
  • to identify, develop, promote and implement the best practice for SMA;
  • to promote and sustain scientific and medical research and collaboration in all fields of Spinal Muscular Atrophy;
  • to increase collaboration between member countries.

Last evaluation: December 2016

Thalassaemia International Federation (TIF)

The Thalassaemia International Federation (TIF) was founded in 1986. It is the global umbrella organisation of thalassaemia patient associations. It has been working in an official relationship with the World Health Organization (WHO) since 1996.

Representativity

TIF represents thalassaemia associations, other patient associations and health-related bodies, and individuals from around the world. Currently it has 106 general or voting members from 62 countries and 113 associate members.

Vision

TIF’s vision is equal access to appropriate healthcare and good quality of life for every patient with thalassaemia across the world.

Mission and objectives

TIF’s main objectives are:

  • to promote the development and implementation of effective control programmes, including prevention and clinical management of thalassaemia, working in collaboration with national governments, health professionals, scientists and other stakeholders;
  • to establish new national thalassaemia associations around the world;
  • to educate patients, carers, healthcare professionals and the general public though its educational programme, which includes a wide range of publications, workshops and conferences at local and international levels.

Last evaluation: December 2016

United Parent Projects Muscular Dystrophy (UPPMD)

The United Parent Projects Muscular Dystrophy (UPPMD) is a worldwide organisation dedicated to finding a cure and viable treatments for Duchenne muscular dystrophy (DMD), to promoting good standards of care, and to informing parents around the globe.

Introduction

UPPMD is a worldwide organisation dedicated to finding a cure and viable treatments for Duchenne muscular dystrophy (DMD), to promoting good standards of care, and to informing parents around the globe.

Representation

UPPMD is represented worldwide by its members (patient organisations) in 16 European and 6 non-European countries.

Vision

UPPMD believes that when parents shoulder responsibility and work together they will have a greater impact on the future and lives of the patients suffering from this disease.

Mission and objectives

UPPMD is a worldwide organisation dedicated to finding a cure and viable treatments for DMD, to promoting good standards of care, and to informing parents around the globe. The organisation will in particular devote itself to the realization of this task by way of the following objectives:

  • to promote research activities;
  • to provide information to parents and clinicians on ongoing research, drug development, standards of care, and patient advocacy.

Last evaluation: November 2016

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