Provides information about PNH and Soliris for patients and healthcare professionals.
Sponsored by Alexion.
Provides information about PNH for patients and healthcare professionals. Sponsored
Provides information about aHUS for patients and healthcare professionals. Sponsored
Eurordis is dedicated to helping people with rare diseases and assisting the organizations
that serve them.
Orphanet is a database of information on rare diseases and orphan drugs for all
publics. Its aim is to contribute to the improvement of the diagnosis, care and
treatment of patients with rare diseases.
NORD is dedicated to helping people with rare diseases and assisting the organizations
that serve them. NORD is committed to the identification, treatment, and cure of
rare disorders through programs of education, advocacy, research and service.
An organization dedicated to raising funds for PNH research and helping families
with disease-related expenses not covered by insurance.
AA-MDSIF is a nonprofit patient organization that serves as a resource for patient
assistance, patient education advocacy and support. The organization supports research
to find treatments and potential cures for aplastic anemia (AA), myelodysplastic
syndromes (MDS), and related bone marrow diseases including PNH. The AA-MDSIF website
provides educational materials and medical information about AA, MDS, and PNH.
A non-profit organization and interactive website designed to provide information and support for families dealing with aHUS.
A social networking site sponsored by NORD and Eurordis to help patients and families connect with and support each other and share vital experiences of living with a rare disease.