Websites linking back to rareconnect.org

The IPPF provides patients & doctors worldwide with information about pemphigus and pemphigoid, & provides patients & their caregivers with comfort & support.

RareConnect promotes global conversation and collaboration to improve the lives of rare disease patients and assist the organizations that serve them. RareConnect is an online social network for patients and families who live with one of over 6,000 rare diseases to connect with one and other to support and share vital experiences on aspects of living with a rare disease. Organized into disease specific communities, the platform also provides links to quality information, clinical trials and research publications and provides an opportunity for international networking and collaboration between patient organizations.

Livet med Aorta Dissektion Typ A

Community website for The Atypical HUS Foundation

The ORIGINAL Cystinosis Foundation. We are a non-profit organization, with more than 34 years of International experience in supporting and educating families and the medical community through the dissemination of educational literature, funding research, and annual conferences.

Bienvenidos a la web oficial de FMF España, la Asociación de enfermos de Fiebre Mediterránea Familiar de España.

Willkommen auf der Website der Vereinigung Dravet Syndrom Schweiz

EURORDIS - Rare Diseases Europe, is a non-governmental patient-driven alliance of rare disease patient organisations representing 745 rare diseases patient organisations in 65 countries. We are dedicated to improving the quality of life of all people living with rare diseases in Europe

Rare disease information gateway, support groups directory, practical advice, health and disability resources, research information, news and issues.

The Alliance For Cryoglobulinemia works to connect Patients. We want to help you understand how to live with Cryoglobulinemia. Cryoglobulinemia is a rare disease.

Set up in 2000, The Lowe Syndrome Trust supports families affected by Lowes Syndrome and funds medical research into Lowe Syndrome

The Cystinosis Research Network is a volunteer, non-profit organization dedicated to supporting and advocating research, providing family assistance and educating the public and medical communities about cystinosis.

The RUNX1 Research Program is a research and advocacy venture committed to funding world-class, innovative and cross-disciplinary cancer research to find a cure for those with the germline RUNX1 mutation, a familial platelet disorder with a predisposition to leukemia. The program also aims to support, inform, educate and connect patients and healthcare providers in the RUNX1 community. Frequently Asked Questions.

Selbsthilfe EPP e.V. - "WENN SONNE WEH TUT"