CT Rare Action Network Advocacy Workshop May 3
Learn more about rare disease patient advocacy and connect with the National Organization for Rare Disorders (NORD) about current legislative action on Friday, May 3, at the Connecticut Rare Action Network (RAN) Advocacy Workshop.
The event runs from 8:30 a.m. to 3 p.m. at The Goodwin Hotel, One Haynes St., Hartford, CT. It is hosted at no cost to participants; breakfast and lunch will be provided.
The workshop features an opportunity to speak directly with members of Congress from Connecticut about the Orphan Drug Act (ODA) of 1983. Orphan drugs are medications intended for the safe and effective treatment, diagnosis or prevention of rare diseases/disorders that affect fewer than 200,000 people in the United States, or that affect more than 200,000 people but are not expected to recover the costs of development and marketing a treatment drug, according to the Food and Drug Administration.
Online registration closes at noon, Tuesday, April 30.
The ODA encouraged increased development of drugs for rare diseases. More than 450 orphan therapies have been developed by private industry since its enactment, compared with 10 therapies, 10 years before the 1983 legislation. Thirty years later, in 2013, orphan therapies comprised one-third of all drugs approved by the FDA, according to NORD.
NORD founders helped spearhead the Orphan Drug Tax Credit, characterized as one of the most important incentives for orphan drug development, and enacted as part of the ODA. The provision allows a 25 percent tax credit for sponsors on certain research and development costs for orphan drugs. NORD said that coupled with other incentives in the ODA, the tax credit has proven its efficacy, and it is in danger of repeal.
For information on RAN events nationally, check your state RAN and sign up to receive notice of upcoming activities.
Upcoming NORD/RAN events include:
- A workshop in Massachusetts, like that of Connecticut’s: NORD Massachusetts Rare Action Network Patient Advocacy & Orphan Drug Workshop; Friday, July 19, from 8:30 a.m. to 3:00 p.m.
- June 21 to 23 NORD presents its 2019 Living Rare, Living Stronger NORD Patient & Family Forum in Houston, TX.
If you have any questions, please contact NORD’s Associate Director of Advocacy Kristen Angell at 203-304-7251 or kangell@rarediseases.org