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.

  • 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.

  • CORD: Canadian Organization For Rare Disorders
    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.

  • 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.

  • 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 of North America
    Gluten Intolerance Group’s mission is to support persons wih gluten intolerances, celiac disease, dermatitis herpetiformis, and other gluten sensitivities, through consumer and industry services and programs that positively promote healthy lives

  • Healthy Villi
    Healthy Villi is a membership-based, non-profit, all-volunteer organization whose mission is to provide support and education to people with celiac disease and their families.

  • Immune Deficiency Foundation
    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.

  • Information Centre for Rare Diseases and Orphan Drugs - Bulgaria
    The main functions of ICRDOD are providing free information on rare diseases, specialized clinics, laboratories in Europe and the world, bringing together leading experts, physicians and patients, creating and maintaining multilingual website for informational and educational purposes (; organizing workshops and conferences; establishing contacts with scientific and patient organizations from Bulgaria and Europe.

  • International MPS Network
    The International MPS Network is the official body of the patient associations representing Mucopolysaccharidose diseases (MPS) and MPS Societies at a European and global level.

  • National Organization for Rare Disorders, Inc. (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.

  • Romanian National Alliance For Rare Diseases
    Our MISSION is to develop and carry out lobbying activities and advocacy to improve the quality of life of patients with rare diseases in Romania through the empowerment and involvement of social actors in this area: patients, families, professionals and decision factors. - See more at:

  • The 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.

  • 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 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.

  • The 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.

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