Rare Disease Patient Group in Overseas
National Organization for Rare Disorders(NORD)
(USA)
NORD advances practical, meaningful, and enduring change so people with rare diseases can live their fullest and best lives. Every day, we elevate care, advance research, and drive policy in a purposeful and holistic manner to lift up the rare disease community.
APARDO
We are patient advocate leaders from across the Asia Pacific region representing rare diseases and rare cancers bound together with the goals of not only providing a forum for sharing experiences and learning but also increasing rare disease patients’ voice and addressing priority issues.
EURORDIS
(Europe)
Rare Diseases International
Switzerland
Orphanet
(France)
Genetic and Rare Diseases Information Center (GARD)
EURORDIS – Rare Diseases Europe is a unique, non-profit alliance of over 1000 rare disease patient organisations from 74 countries that work together to improve the lives of over 300 million people living with a rare disease globally. By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services.
Rare Diseases International (RDI) is the global alliance of people living with a rare disease of all nationalities across all rare diseases. RDI’s mission is to be a strong common voice on behalf of rare disease patients around the world, to advocate for rare diseases as an international public health priority and to represent its members and enhance their capacities.
Orphanet is a comprehensive resource dedicated to rare diseases and orphan drugs. It provides detailed information on rare diseases, medical guidelines, and patient organizations.
Orphanet was established in France in 1997 at the advent of the internet in order to gather scarce knowledge on rare diseases so as to improve the diagnosis, care and treatment of patients with rare diseases. This initiative became a European endeavour from 2000, supported by grants from the European Commission: Orphanet has gradually grown to a network of 41 countries, within Europe and across the globe.
Managed by the National Institutes of Health (NIH), GARD offers information on rare and genetic diseases, including detailed descriptions and resources
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GARD is to support people living with a rare disease and their families by providing free access to reliable, easy-to-understand information in English and Spanish. Improving access to information on rare diseases will help GARD deliver the most up-to-date research and resources to more people faster.
The Malaysia Lysosomal Diseases Association (MLDA)
Rainbow Across Borders
(Singapore)
Rare Connect
(Europe)
The European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (E.S.PKU)
(Europe)
The Malaysia Lysosomal Diseases Association (MLDA) is a non- profit organisation which advocates for patients’ rights to a sustainable health care and support system. It also raises the awareness of the general public about the life threatening Lysosomal Storage Diseases.
Rainbow Across Borders aims to improve the quality of life of, and give dignity to, patients and family
Hosted by trusted patient advocates, RareConnect is a place where rare disease patients can connect with others globally. RareConnect is a safe environment where privacy is respected and where trusted information is shared via real patient representatives.
E.S.PKU is the umbrella organisation of about 41 national and regional associations from 31 countries established by parents. Since 1987, representatives of most European countries have come together to improve the quality of life of persons afflicted.
​The main event of the E.S.PKU is a yearly European conference. This conference is unique, since both patients (and parents) as well as medical representatives join this meeting. The patients have their own sessions and there is a medical conference. In between the sessions there is time enough to get to know each other.
The International Pompe Association (IPA)
(The Netherlands)
The International Pompe Association (IPA) is a federation of Pompe disease patient’s groups world-wide. It seeks to coordinate activities and share experience and knowledge between different groups.
Genetic Alliance Australia (GA) endeavours to facilitate contact between families/individuals affected by the same, or similar condition, and/or provide information about relevant support groups both nationally and internationally. GA also deals with enquiries about services and facilitates ongoing support for individuals, families, health professionals and other interested groups. GA has an extensive rare disease database representing 1400 conditions and over 3500 individuals and families affected by genetic conditions.
RVA is dedicated to working with all key stakeholders to drive the best outcomes for Australians living with a rare disease.
​RVA provides collaborative leadership for the development and implementation of rare disease policy in Australia.
Fabry Australia is a patient-run non-profit organisation founded in 1994 around the kitchen table by Fabry patients. It is a registered charity supported by voluntary donations, educational grants, fundraising and is managed by a voluntary management Committee.
(USA)
Global genes is one of the leading rare diseases advocacy organisations in the world uniting rare patients, caregivers, advocates and clinicians. The non-profit organisation represents over 500 global organisations.