WELCOME TO ORPHAN DISEASE NETWORK!
"Adopting Gene Research for a Cure"
Your portal to information on Hereditary, Acquired, & Idiopathic Angioedema, the Ciliopathies including BBS, Joubert; the Lysosomal Storage Disorders including Gaucher, Fabry, Pompe, MPS; Specialty Pharmacy, and Social Security Disability.
ORPHAN DISEASE NETWORK'S GOALS
1.to provide information and current research for patients and their physicians, and
2. to support advocacy groups for rare, orphan diseases
3. to promote research on and access to FDA approved treatments to alleviate the suffering and deaths from these diseases, often related to denial of medical treatment due to insurance and other health plan authorization denials, and due to a lack of education about rare diseases and their medical treatment options.