A non-government patient-driven alliance of 606 rare disease patient organizations in 56 countries

One of the leading rare disease patient advocacy organizations in the world

Federation of health organizations dedicated to helping people with rare diseases

A Shire community where patients share their experiences and help support others going through similar challenges

A source of information on the issue of prescription stimulant medication misuse, abuse and diversion

Committed to finding a cure and improving the lives of those living with Alpha-1 worldwide

A national organization focused on providing leadership, recognition, prevention, and treatment of binge eating disorder (BED)

The largest nonprofit organization dedicated to supporting individuals and families affected by eating disorders

A Shire community providing information for U.S. residents suffering from chronic dry eye

Organization dedicated to support the Fabry disease community and promoting advocacy for its issues

Our primary aim is to facilitate collaboration between Patient Organisations to support those affected by Fabry Disease

A nonprofit organization whose mission is to raise Fabry awareness by linking patients and family members/caregivers

Promoting awareness, pioneering research and providing support and information for those affected by Gaucher disease

An objective, independent voice of the Gaucher community, providing leadership, outreach and innovative thinking in the US

Supports National Member Organisations to improve quality of life of people living with rare bleeding disorders

Advocate of access to safe, affordable therapies and better quality of life for those with bleeding disorders

Dedicated to finding better treatments and cures for bleeding disorders through education, advocacy, and outreach

Committed to global leadership in improving and sustaining care for people with inherited bleeding disorders

A U.S. community developed by Shire about bleeding disorders, hemophilia, school, relationships and more

Download the U.S. BEAT BLEEDS® mobile app to track your bleeds

Founded and staffed by HAE patients and HAE caregivers, HAEA is dedicated to serving persons with angioedema

A global organization dedicated to raising awareness of C1 inhibitor deficiencies around the world

Discover HAE is a patient community provided by Shire for those in the U.S. affected by and living with HAE

Support for families and individuals affected by mucopolysaccharidoses (MPS) and related diseases in the US

Works to improve the lives of those touched by hypoparathyroidism through awareness and support

A resource for patients and families in the U.S. managing hypoparathyroidism

National patient organization dedicated to improving the diagnosis, treatment & quality of life of persons with PI

Focused on improving awareness, access to early diagnosis and care for people with PID worldwide

Global Organization dedicated to early diagnosis and the search for treatments and cures for Primary Immunodeficiencies

A Shire community of support and education for those in the U.S. affected by a PI diagnosis

Oley provides resources to consumers dependent on home parenteral (IV) and enteral (tube-fed) nutrition

The Short Bowel Syndrome Foundation strives to educate, support, and empower patients who live with SBS

The IFFGD is a nonprofit organization dedicated to helping those affected by chronic digestive conditions

The ASPEN patient information center was designed to provide patients and caregivers with information about nutrition support, including parenteral and enteral nutrition

PINNT is a UK-based organization that supports patients on intravenous and naso-gastric nutrition treatment

The UOAA supports, empowers, and advocates for people affected by ostomy or continent diversion surgery