Diane Edquist Dorman

Ms. Dorman is the Vice President for Public Policy for the National Organization for Rare Disorders (NORD) and leads NORD efforts in its relationship with the federal government and Congress. She is the primary DC representative for more than 25 million Americans who have one of the 6000 to 7,000 known rare diseases. Her overriding mission is to improve the plight of patients with rare diseases and increase incentives for the development of orphan drugs, devices, and diagnostics.

Since joining NORD in October 2000, Ms. Dorman’s advocacy has been instrumental in the passage of two new public laws and she has been influential in the adoption of numerous programs, regulations and guidances that touch the lives of patients with rare diseases.

On behalf of NORD and coalitions in which NORD participates, Ms. Dorman leads education and outreach programs to gain policymaker support for increased research into rare diseases and greater development of orphan products. She sits on the Board of Directors of the Alliance for a Strong FDA, and serves as NORD’s representative to the National Council on Patient Information and Education (NCPIE) Board of Directors, and sits on the Advisory Committee of the Keck Graduate Institute Center for Rare Disease Therapies based in Claremont, CA. Ms. Dorman has recently been appointed to the Council of the Convention of the US. Pharmacopeia.

She is responsible for ensuring that patients continue to have access to life-saving orphan therapies through Medicare, Medicaid and private insurance. She also serves as NORD’s primary liaison to the Food and Drug Administration, the National Institutes of Health, Social Security Administration, and the Center for Medicare and Medicare Services, as well as the biopharmaceutical and medical device industries. Ms. Dorman has been appointed as a consumer representative to the Medicare Evidence Development Coverage Advisory Committee.

Ms. Dorman develops and maintains relationships with other healthcare voluntary agencies and patient groups. She provides technical assistance and legislative analysis to NORD’s member agencies on government-related matters, as well as the training of staff and volunteers of member organizations. Her leadership efforts have led to introduction and passage of the Rare Diseases Act (P.L. 107-281), and the Rare Diseases Orphan Product Development Act (P.L. 107-281). She was also influential in the introduction of House Concurrent Resolution 147, commemorating the 20th Anniversary of the Orphan Drug Act.