Eligible patients and consumers organisations

The European Medicines Agency (EMA) engages with a network of eligible patients and consumers organisations, ensuring that their needs and concerns are represented via direct contact with the Agency.
CorporateGovernance

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 working party is outlined in its mandate, available on the PCWP's webpage.

List of eligible organisations

logos

AGE Platform Europe (AGE) voices and promotes the interests of the 198 million citizens aged 50+ in the European Union and to raise awareness of the issues that concern them most.

Representation

Through its 120 members, AGE network represents more than 40 million senior citizens across the EU.

Vision

AGE's vision is an inclusive society for all ages, based on solidarity and cooperation between generations.

Mission and objectives

AGE network seeks to promote older people's rights at EU and international levels, to combat ageism and support a dignified, active and socially included old age for all. It also supports the participation of its member organizations in relevant EU, United Nations and Council of Europe work and projects, networking and related actions at national level.

Last evaluation: December 2024

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.

Representation

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 2024

The Association of European Cancer Leagues (ECL), established in 1980, is a non-profit, pan-European umbrella organisation of national and regional cancer societies.

Representation

As of November 2022, ECL represents, supports and unites 31 cancer leagues across 26 countries in the WHO European region, of which 21 are EU Member States. The full member list can be found here.

Vision

ECL’s vision is a Europe free of cancers.

Mission and objectives

ECL provides a voice and a forum for cancer leagues to collaborate with their international peers, primarily in the areas of primary and secondary cancer prevention, access to medicines, and patient support. ECL creates opportunities to advocate for these issues at the EU level and supports the capacity-building and advocacy activities of members.

Last evaluation: December 2024

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.

Representation

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 organisations 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 2024

Founded in 1992, the European AIDS Treatment Group (EATG) is a patient-led NGO that advocates for the rights and interests of people living with or affected by HIV/ AIDS and related co-infections within the WHO Europe region.

Representation

The EATG is a network of more than 160 members from 45 countries in Europe. EATG members are people living with HIV (PLHIV) and representatives of different communities affected by HIV/AIDS and co-infections.

Vision

Equitable, speedy and sustainable access to:

  • effective treatments and holistic care for all PLHIV and associated infections and morbidities;
  • effective prevention and diagnosis for all communities affected by HIV and associated infections and morbidities.

Mission and objectives

To engage, inform and empower all people living with and affected by HIV in:

  • improving their health-related quality of life and holistic well-being throughout their life cycle;
  • increasing the usage of HIV, viral hepatitis, TB, and STI combination prevention and testing strategies in affected communities;
  • ensuring that ongoing research continues to yield best quality new HIV, viral hepatitis, TB and STI diagnostics, medicines, medical devices and care, as well as progress towards cure.

Last evaluation: December 2024

The European Consumer 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.

Representation

The European Consumer Organisation (BEUC) acts as the umbrella group in Brussels for 40+ independent consumer organisations from 30+ countries. Its main role is to represent them to the European institutions and defend the interests of European consumers.

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's daily work involves making sure the EU takes policy decisions that improve the lives of consumers. This covers a range of topics including competition, consumer rights, digital rights, energy, enforcement, financial services, food, health, safety, sustainability and trade policy.

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 2024

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.

Representation

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: December 2024

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.

Representation

Members and affiliates range from large organisations (e.g. Stroke Alliance for Europe, Parkinson's Europe and the European Migrane and Headache Alliance) to small (e.g. Euroataxia, Dystonia Europe 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: January 2025

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.

Representation

EFCNI represents about 80 national parent/patient 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: December 2024

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.

Representation

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: December 2024

The European Heart Network (EHN) was founded in 1992 and has members across Europe. EHN is a Brussels-based alliance of national heart foundations and associations dedicated to preventing cardiovascular diseases (CVD), supporting patients, representing patient interests and funding research throughout Europe.

Vision

Every European has a right to a life free from avoidable cardiovascular diseases.

Mission and objectives

EHN plays a leading role in the prevention and reduction of cardiovascular diseases in particular, heart disease and stroke, through advocacy, networking, capacity-building, representation of patient interests and research so that they are no longer a major cause of premature death and disability in Europe.

EHN does this through:

  • influencing EU policies affecting cardiovascular health and people living with cardiovascular diseases
  • connecting organisations concerned with cardiovascular health, supporting people living with cardiovascular diseases and representing their interests
  • gathering and disseminating information relevant to cardiovascular health promotion, prevention and optimal treatment and care of cardiovascular patients
  • strengthening our membership capacity, including enabling and empowering patient engagement in policy and research.

Last evaluation: December 2024

The European Huntington Association (EHA) was funded in 1986. EHA is a non-profit umbrella organization for Huntingtons Disease (HD). It supports HD affected by working for better understanding, care and treatment in HD.

Representation

EHA has 43 member associations from 28 countries. It represents more than 30.000 people affected with HD in Europe.

Vision

To connect, empower and inspire people affected with HD.

Mission and objectives

  • Raise awareness of HD.
  • Fight stigma and shame by promoting respect and dignity.
  • Be a strong and clear patient advocate voice.
  • Work for better treatment and care for HD patients and families all over Europe.
  • Motivate the HD community to take part in research and trials.
  • Exchange knowledge and experiences about good practise.
  • Support and enhance collaboration across borders.
  • Support establishment of new HD associations where needed.

Last evaluation: December 2024

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.

Representation

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 achieve 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 mission 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: February 2025

The European Liver Patients' 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.

Representation

ELPA represents patients with hepatitis and liver disease and consists of 31 national liver patient associations from 25 countries from all over Europe and the Mediterranian basin (status on October 2019).

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 (EASL) 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 2024

European Lung Foundation (ELF) is a patient-driven organisation that works internationally to bring patients and public together with healthcare professionals to improve lung health and advance diagnosis, treatment and care.

Representation

ELF works with more than 350 volunteer patients organised into Patient Advisory Groups (PAGs) and more than 200 respiratory organisations who are part of a patient organisation network. ELF covers 40 different disease areas.

Vision

People living with lung conditions will be centrally involved in lung healthcare and research, and everyone in Europe will have clear, reliable information they can trust in their own language.

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 to those outside the field of lung health.

ELF’s latest strategy has 6 key areas of focus:

  • Be patient-driven;
  • Improve knowledge, understanding and support self-management;
  • Engage and empower;
  • Have a strong and diverse community and voice;
  • Ensure good governance;
  • Increase resource and reach.

Last evaluation: January 2025

The European MEN Alliance (EMENA) is an umbrella organisation formed in 2013 .The Alliance consists of equal representation from European patient groups and from the expert multidisciplinary medical professionals.

Representation

EMENA was founded in 2013 in Munich and provides information and support services to patients with multiple endocrine neoplasia (MEN types 1, 2, 3 and 4).

Vision

EMENA´s vision is the improvement of the diagnosis, treatment and quality of life of people affected by MEN. The activities shall promote the awareness for people affected by MEN. 

Mission and objectives

The mission of EMENA is the advancement of public health. In particular, this purpose will be achieved through

  • The publication of medical, social and legal information or recent scientific developments with regard to Multiple Endocrine Neoplasia (MEN);
  • The organisation and implementation of scientific events related to MEN;
  • The promotion of MEN patient groups.

Last evaluation: December 2024

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 1,200,000 patients with MS in the fields of public health and social issues.

Representation

At present, EMSP has 43 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

A world without MS, achieved in partnership with people living with MS, their communities across Europe, and their allies.

Mission and objectives

  • To provide a robust platform for capacity building: to engage, educate and inspire representatives and advocates of people affected by MS to be a strong and effective voice
  • To strive for better access to treatments, therapies, and integrated care for people with MS across Europe
  • To promote evidence-based good practice, and more effective health and social care for people with MS, through digitalisation and health data
  • To fight for equity and social inclusion and social protection of people affected by MS
  • To support more and better investment of people and resources in MS research

Last evaluation: December 2024

The European Patients' Forum (EPF) is the leading voice of patient organisations in Europe. EPF leads patient advocacy in Europe providing a cross-disease perspective from a wide patient community to the policy-making process on issues which have a direct impact on patients’ lives.

Representation

EPF currently represents 75 patient organisations representing 19 countries and an estimated 150 million patients across Europe.

Vision

A Europe where patient organisations are valued partners in creating equitable, person-centered, accessible, and sustainable healthcare systems, based on patients’ unique expertise.

Mission and objectives

EPF's mission is to advance the interests of patients and patients’ communities by strengthening their collective impact across Europe through effective advocacy, education, empowerment, and partnership.

EPF's five core strategic goals as defined by EPF 2021-2026 strategic plan are:

  1. Shaping a new European agenda for patients
  2. Meaningful patient involvement in co-creating better health policy, practice, research and education
  3. Digital transformation that delivers for patients
  4. Accessing the healthcare we need with no discrimination
  5. Strengthening patient communities across Europe

Last evaluation: December 2024

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.

Representation

EPHA comprises 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 2024

The European Pulmonary Fibrosis Federation (EU-IPFF) aims to defend the interests of patients with idiopathic pulmonary fibrosis by supporting an immediate and sustainable improvement of the quality of life and survival time of IPF patients.

Representation

EU-IPFF currently represents 20 national patient associations from 16 European countries. It collaborates closely with its associated members from outside Europe and aims to further expand its membership.

Vision

EU-IPFF and its members firmly believe that all patients, regardless of geography, socio-economic status or age, deserve equal access to IPF treatment and care.

Mission and objectives

EU-IPFF serves as a trusted resource for a united IPF patient voice by raising awareness, providing disease education, advancing care, and funding research. The Federation’s objectives include:

  • Improving access to treatment and services, including non-pharmacological treatment and medication
  • Improving access to information on new and current trials
  • Enhancing information exchange and collaboration between European and international IPF patient associations
  • Supporting the establishment of patient associations in countries where no such associations exist

Last evaluation: December 2024

The European Pulmonary Hypertension Association (PHA Europe) is the umbrella organisation for national associations of patients living with pulmonary hypertension (PH) in Europe. It was founded in Vienna, Austria, in 2003.

Representation

Over the years membership has grown steadily and currently stands at 33 patient associations from 27 countries from Europe and beyond.

Vision

PHA Europe and its members are sharing the vision of making the quality of life of the patients living with pulmonary hypertension better and ultimately finding a cure for this disease.

Mission and objectives

PHA Europe works together with its members to enhance awareness of pulmonary hypertension across Europe, promote optimal standards of care for people living with the disease, ensure the availability of all approved treatments and encourage research for new medicines and therapies.

Latest evaluation: December 2024

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.

Representation

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: December 2024

The Global Alliance of Mental Illness Advocacy Network (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.

Representation

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. Out of 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 2024

Health Action International (HAI) is a non-profit, independent NGO network founded in 1981, working to ensure affordable access to medicines and improve their rational use through research excellence and evidence-based advocacy. Our staff and global network of members and programme partners in 34 countries worldwide, of which 19 are in the EU, share expertise and work to solve medicine access and use issues around the world.

Representation

In the European region, HAI has grown to become a preeminent voice on pharmaceutical policy discussions. The HAI Europe Association is comprised of about 119 individual and organisational members. Members provide expertise and support HAI's work in the region. The Association consists of patient and consumer groups, public interest non-governmental organisations, healthcare providers and academics.

Vision

A world with safe, effective, affordable and quality-assured medicines for everyone, everywhere.

Mission and objectives

To conduct research and advocacy to advance policies that enable access to medicines and rational medicines use for all people around the world. HAI focuses on creating long-lasting changes to government and industry policies and practices, rather than on temporary solutions. HAI pursues advocacy from the patient level to the highest levels of government through 'official relations' status with the World Health Organization and respected relationship with the European Medicines Agency.

HAI's priority programme in the European region embodies the core components of its mission:

  • access to affordable medicines: medicines that meet priority health needs are available, accessible and affordable to all patients in Europe;
  • medicines safety, added therapeutic value and responsible use: all licensed medicines are acceptably safe and have recognised added therapeutic value; medicines are appropriately prescribed and used;
  • democratisation of medicines policy: EU decision-making processes on medicines policy are transparent, accountable and enable independent civil society to contribute to the process. Civil society in Europe is capacitated to actively engage in medicines policy discussions.

Last evaluation: December 2024

The International Alliance of Dermatology Patient Organizations (GlobalSkin) is a unique global alliance, committed to improving the lives of patients worldwide.

Representation

GlobalSkin has 180+ patient association members located in 60+ countries representing more than 65 disease areas.

Vision

GlobalSkin’s vision is a world where people with dermatological conditions lead healthy and fulfilling lives.

Mission and objectives

GlobalSkin’s mission is to lead a global movement for people living with dermatological conditions by:

  • uniting patient voices
  • empowering patient organizations
  • stimulating research
  • influencing decision makers
  • collaborating with communities of interest

Last evaluation: December 2024

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

IAPO's members are patients' organisations 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: December 2024

The International Bureau for Epilepsy (IBE), established in 1961, is an international umbrella organisation representing national epilepsy organisations.

Representation

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: January 2024

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

Representation

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

Vision

IGA's visions is a world where all Gaucher patients have access to the treatment and care they need and there is the possibility of a cure.

Mission and objectives

IGA has the mission to be the global voice for Gaucher patients and their families:

  • to empower its members;
  • to advocate on behalf of Gaucher patients;
  • to ensure that the Gaucher research agenda is focussed on patients' unmet needs;
  • to take collective action to address challenges Gaucher patients worldwide face in accessing early diagnosis and optimal treatment and care.

Last evaluation: January 2025

The International Patient Organisation for Primary Immunodeficiencies (IPOPI) was founded in 1992 as a non-profit international organisation dedicated to improving awareness, access to early diagnosis and optimal treatments for primary immunodeficiency (PID) patients worldwide through global collaboration.

Representation

IPOPI currently has 75 national member organisations representing patients with PIDs, including 22 EU member states.

Vision

IPOPI's vision is to improve awareness, access to early diagnosis and access to care for patients living with primary immunodeficiencies worldwide.

Mission and objectives

IPOPI's four strategic objectives are:

  • To improve access to early diagnosis and patient-centred care through advocacy and awareness.
  • To build capacity and support IPOPI’s national member organisations to improve living conditions for people living with PID.
  • To educate, promote knowledge and data sharing to increase understanding of PID, improve clinical care and advance research.
  • To strengthen multi-stakeholder cooperation to optimize all programmes and activities.

Last evaluation: December 2024

Since 1991 International Prader-Willi Syndrome Organisation (IPWSO) has supported national Prader-Willi syndrome associations, as well as people with Prader-Willi syndrome (PWS), their families and the professionals who work with them.

Representation

IPWSO’s members vote for its Trustees, participate on its boards and as advisors, and serve as active participants in its projects. IPWSO advocates on behalf of its members internationally.

Vision

A world where people with PWS and their families receive the services and support they need to fulfil their potential and achieve their goals.

Mission and objectives

IPWSO’s mission is to unite the global PWS community to collectively find solutions to the challenges of the syndrome and to support and advocate for people with PWS and their families, PWS associations, and professionals who work with people with PWS. IPWSO’s objectives are to provide responsive and effective supports, promote the development of evidence-based interventions, and grow and strengthen the global PWS community.

Last evaluation: December 2024

Lung Cancer Europe (LuCE) is the voice of people living with lung cancer and their families with lung cancer at European level. 

Representation

The organisation collaborates with members and other stakeholders to destigmatise the disease and ensure that those impacted by lung cancer get the care they need to achieve the best possible outcomes.

Vision

All Europeans impacted by lung cancer, including patients, families and caregivers, will have equity in access to optimal care so that they have the best possible outcomes and quality of life

Mission and objectives

LuCE's key challenges and objectives are:
•    To increase access to early and accurate diagnosis of lung cancer in Europe.
•    To improve equity of access to optimal lung cancer treatments and care in Europe.
•    To strengthen the lung cancer patient voice in Europe.
•    To destigmatise the disease by changing the narrative around lung cancer.

Last evaluation: December 2024

Since more than 30 years, Lupus Europe is the European umbrella organisation that brings together national lupus patient self-help organisations from across Europe, representing a combined individual membership of over 30,000 patients.

Representation

Through active engagement in conferences and projects, Lupus Europe brings the voice of people with lupus to impact researchers, decisions makers and key players, for a better life for people with lupus.

Vision

Lupus Europe's vision is “a fulfilling life for all people with lupus in Europe, until we have reached a world without lupus.”

Mission and objectives

Lupus Europe's mission is to be the voice of lupus in Europe and empower the national organisations for people living with lupus. It focuses on 3 strategic objectives: (1) People with lupus in Europe participate in, and benefit from, lupus research; (2) Member organisations are enthusiastic and empowered; (3) Lupus Europe is heard and acting.

Last evaluation: December 2024

Lymphoma Coalition Europe (LCE) is an umbrella organisation of lymphoma member organisations working across Europe, Turkey and Israel. It is a regional branch of the Lymphoma Coalition (global network of 83 patients organisations from 52 countries).

Representation

LCE has a membership of about 40 national and local patient organisations from approximately 30 countries in Europe, plus Turkey and Israel, which are supported by LCE’s work and initiatives.

Vision

LCE's vision is equity in lymphoma outcomes across borders.

Mission and objectives

LCE's mission is enabling global impact by fostering a lymphoma ecosystem that ensures local change and evidence based action.

Objectives

  • To be the global source for lymphoma facts and statistics.
  • To improve awareness and understanding of lymphomas.
  • To build capacity for new and existing lymphoma groups.
  • To improve outcomes for lymphoma by providing credible and reliable knowledge and insight across Europe and harnessing the expertise of member organisations to bring about systemic change. 

Last evaluation: January 2025

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.

Representation

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: December 2024

The Rare Diseases Europe (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.

Representation

EURORDIS represents more than 1000 rare disease organisations in 74 different countries, including the 27 EU Member States (and a total number of 920 organisations in 45 European countries). 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 2024

SMA Europe (SMAE) is a non-profit umbrella organisation of national spinal muscular atrophy (SMA) patient organisations. It works to bring effective treatments and optimal care to everyone living with SMA.

Representation

SMA Europe represents 30 SMA patient organisations from 28 countries across Europe. They put the voice of people living with SMA and their families at the heart of everything they do.

Vision

United to create a better world for all affected by SMA. All together. One goal.

Mission and objectives

SMA Europe strives for earlier diagnosis, effective treatments and optimal care for people living with SMA. It does this by elevating the patients’ voice, by empowering member organisations to advocate and campaign at a national level, and by harnessing that network to advance research and influence stakeholders at a European level.

Last evaluation: December 2024

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.

Representation

TIF represents thalassaemia associations, other patient associations and health-related bodies, and individuals from around the world. Currently it has 204 members from 62 countries.

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: January 2025

The World Duchenne Organization (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 devotes 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: December 2024

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