Genetic Disease

  • Alpha-1 Association
    The Alpha-1 Association is a patient-driven organization dedicated to identifying individuals affected by Alpha-1 and improving the quality of their lives through support, education, advocacy and to encourage participation in research.

  • Amyloidosis Foundation
    Amyloidosis Foundation's mission is to increase education and awareness of amyloidosis within the community leading to earlier diagnosis and improved treatment.

  • Association of European Coeliac Societies (AOECS)
    Founded in 1988, the Association of European Coeliac Societies (AOECS) is an independent, non-profit organization. It is the umbrella organization of European national coeliac societies with currently 38 enrolled Member societies across Europe. AOECS represents people who are affected by coeliac disease or dermatitis herpetiformis (DH) and seeks to collaborate with international celiac organizations worldwide.

  • Belgium Rare Diseases is als nationale alliantie voor zeldzame ziekten erkend door Eurordis, de Europese federatie voor zeldzame ziekten. heeft als opdracht: De stem vertolken van mensen in België die getroffen worden door zeldzame ziekten Ervoor zorgen dat die stem gehoord wordt en dat er naar geluisterd wordt door alle betrokken partijen, vooral door de politiek verantwoordelijken en beleidsmakers.

  • Canadian Organization For Rare Disorders (CORD)
    CORD is Canada's national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.

  • Check Orphan
    CheckOrphan is a non-profit organization located in Basel, Switzerland and Santa Cruz, California that is dedicated to rare, orphan and neglected diseases. CheckOrphan offers users an interactive and dynamic platform for all these diseases. This strategy allows visitors to be updated daily on all the latest news and interact with people internationally. This is essential, because due to the nature of these diseases, there is not a large concentration of individuals within any given proximity.

  • EURORDIS: Rare Disease Europe
    EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 561 rare disease patient organisations in 51 countries. We are the voice of 30 million people affected by rare diseases throughout Europe.

  • EveryLife Foundation for Rare Diseases
    The EveryLife Foundation for Rare Diseases is dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. We can do more with the science we already have and bring life-saving treatments to millions of people suffering from rare diseases.

  • Federación Española de Enfermedades Raras
    La colaboración de particulares o empresas son de vital importancia para la sostenibilidad de nuestros programas. Por esta razón, desde FEDER animamos a todas las personas que tienen inquietudes en el campo de la discapacidad, salud e infancia a sumarse a nuestros proyectos. De todos nosotros depende cambiar y transformar la realidad social que nos afectan y que se vive a muy pocos metros de nuestras casas.

  • Genetic Alliance
    Genetic Alliance is the world’s leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities.

  • Genetic and Rare Disorders Organisation - Ireland
    The Genetic and Rare Disorders Organization (GRDO) is a non governmental organization acting as a national alliance for voluntary groups representing the views and concerns of people affected by or at risk of developing genetic or other rare disorders.

  • Global Genes Project
    The Global Genes Project is an organization with the goal of unifying the global rare and genetic disease community by providing connections and resources to ease the burdens of affected families.

  • Gluten Intolerance Group
    The Gluten Intolerance Group (GIG) has been empowering the gluten-free community through consumer support, advocacy, and education for over four decades. GIG’s outreach is not only to those with gluten-related disorders but to everyone who has made the decision to live gluten-free. With the continued recognition of gluten-free dietary needs and the recent emphasis on gluten-free products and offerings, our role in the community is more important now than ever. From providing community support through our local Branches, to being a leader in food safety certification, GIG is a top non-profit organization for consumers worldwide.

  • Immune Deficiency Foundation (IDF)
    The Immune Deficiency Foundation is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research.

  • Institute for rare diseases (IRD)
    Institute for rare diseases (IRD) is a project of the Bulgarian Association for Promotion of Education and Science (BAPES). Since its establishment in 2003, BAPES (a non-government non-profit organization) has been working to raise the awareness of rare diseases among the medical community and the society as whole in Bulgaria.

  • National Celiac Association
    The National Celiac Association represents and serves individuals with celiac disease and gluten sensitivities.

  • National Organization for Rare Disorders (NORD)
    Committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

  • No Stomach For Cancer
    No Stomach For Cancer is a non-profit who's goal is to advance awareness and education about stomach cancer, including Hereditary Diffuse Gastric Cancer (HDGC), provide a support network for affected families, and support research efforts for screening, early detection, treatment, and prevention of stomach cancer.

  • Orphanet
    Orphanet is the reference portal for information on rare diseases and orphan drugs, for all audiences. Orphanet’s aim is to help improve the diagnosis, care and treatment of patients with rare diseases.

  • Rare Connect
    Living with a rare disease can be an isolating experience. RareConnect was created by EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders) to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources.

  • Rare Disease Foundation
    The Rare Disease Foundation is focused on linking basic science and clinical practice to increase the efficiency of rare disease research.

  • Rare Disease UK
    RDUK is the national alliance for people with rare diseases and all who support them. It was established by Genetic Alliance UK, the national charity of over 140 patient organizations supporting all those affected by genetic conditions, in conjunction with other key stakeholders in November 2008.

  • Rare Diseases Clinical Research Network
    The Rare Diseases Clinical Research Network (RDCRN) is made up of distinctive consortia that are working in concert to improve availability of rare disease information, treatment, clinical studies, and general awareness for both patients and the medical community.

  • Sephardic Health Organization for Referral & Education (SHORE)
    The Sephardic Health Organization for Referral & Education (SHORE) is a self standing organization comprised of organizations, synagogues, prominent members, physicians, and spiritual leaders from the Sephardic community sharing a common goal of combating Sephardic Jewish genetic diseases.

  • The Mastocytosis Society
    The Mastocytosis Society is a 501(c)3 nonprofit organization dedicated to supporting patients affected by Mastocytosis or Mast Cell Activation Disorders as well as their families, caregivers, and physicians through research, education, and advocacy. - See more at:

  • The Society for Mucopolysaccharide Diseases
    The MPS Society is the only registered UK charity providing professional support to individuals, families and professionals affected by MPS and related diseases throughout the UK.

  • Uniamo
    Uniamo Federazione Italiana Malattie Rare onlus nasce a Roma nel luglio del 1999 dalla volontà di venti associazioni che si occupano di malattie rare.