Genetic Disease

850 Health Sciences Rd
Irvine California 92697
Phone: 888-430-9898

FEATURED RESOURCE: Living with AMD? Take Charge.

Our Mission is to provide comprehensive, easily understood and up-to-the-minute information about macular degeneration for everyone who needs it.

We support ongoing research in Macular Degeneration to help find new treatments and a cure for this sight-robbing disease.

Through our efforts, we will continue to coordinate advocacy campaigns throughout the world.

We will use all tools available to us – the internet, the telephone, public events and printed materials.

124 South Maple Street
Ambler PA 19002
Phone: 215-325-1306
Fax: 215-643-1707

FEATURED RESOURCE: Gluten in Medications

Beyond Celiac advances widespread understanding of celiac disease as a serious genetic autoimmune condition and works to secure early diagnosis and effective management. We empower our community to live life to the fullest, and serve as a leading and trusted resource that inspires hope, accelerates innovation and forges pathways to a cure.


LAL Solace is a support organization for patients and families affected by Lysosomal Acid Lipase Deficiency; both the early onset (Wolman's Disease) and the late onset (Cholesterol Ester Storage Disease). We provide resources such as education about the disease, clinical trial information, and the ability to share personal stories with other members of the LAL community.

Additional Resources

  • 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.

  • 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 Celiac Association
    The Canadian Celiac Association is the national voice for people who are adversely affected by gluten, and is dedicated to improving diagnosis and quality of life.

  • 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.

  • Cooley's Anemia Foundation
    The Cooley’s Anemia Foundation is dedicated to serving people afflicted with various forms of thalassemia, most notably the major form of this genetic blood disease, Cooley’s anemia/thalassemia major.

  • 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.

  • 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 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
    Alianța Națională pentru Boli Rare din România a fost înființată la inițiativa Asociației Prader Willi din România în august 2007, printr-un proiect finanțat de către CEE Trust. Pentru înființarea Alianței și-au reunit eforturile 32 de membri fondatori: organizații de boli rare și grupuri de pacienți pentru care boala este atât de rară încât nu există o asociație.

  • 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.