WELCOME TO ORPHAN DISEASE NETWORK!
"Adopting Gene Research for a Cure"
Your portal to information on Hereditary, Acquired, & Idiopathic Angioedema, the Ciliopathies including BBS, Meckel-Gruber, Joubert, Jeune, LCA, NPHP; 22q11DS/Di George Syndrome, the Glycogen Storage Disorders: vonGierke, Pompe, Cori, Andersen, McArdle, Hers, Tarui, IX, and O; the Lysosomal Storage Disorders including Gaucher, Fabry, Pompe, Hunter, Hurler, MPS and Tay-Sachs Diseases; Specialty Pharmacy, Schools & Disabled Children, Social Security Disability, and Chronic Pain Resources.
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.
A CALL TO ACTION: Stop Insurance Company Denial of Pharmacy Benefits without Notice
If insurance companies were required to give 2 weeks notice of a pending denial of life-saving medication, the physician would have time to appeal.
If this has ever happened to you, or you fear it might, please join me by emailing the White House asking for a change in insurance company denials without prior notice.
Maybe together we can make a difference by preventing suffering and saving lives.