National Organization for Rare Disorders (NORD)
Celiac disease and refractory celiac disease are currently listed as rare diseases. CSA actively supports the NORD position and letter linked below. A letter of support was signed by CSA to support NORD's original work on this project.
The following letter was released by NORD on April 6, 2012.
You may have received an email this morning from another organization urging immediate action, including contacting Senators Harkin and Enzi, related to the rare disease language in the Senate's discussion draft of the Prescription Drug User Fee Act (PDUFA), which was released Wednesday night.
We want you to be aware that NORD strongly disagrees with the message in that email. To the contrary, we believe the Senate HELP Committee is listening to the rare disease community and working hard to ensure that the community's positions are well represented. NORD has been working closely with the committee and we support the language in the Senate PDUFA draft, as well as the FAST Act.
We wanted you to know that NORD is sending a letter to Senators Harkin and Enzi today, thanking them for their efforts on behalf of the rare disease community. For rare disease patient advocates to contact members of Congress without having complete information at this time could be counter-productive.
Digestive Disease National Coalition (DDNC)
DDNC Public Policy Forum Celiac Sprue Association members are encouraged to attend:
On Sunday, the PPF will consist of presentations on federal-level digestive disease policy made by the Food and Drug Administration, the Department of Health and Human Services and others. On Monday, DDNC members have will an opportunity to meet with their congressional representatives.
Public Policy Forum
Alliance for a Stronger FDA
The Genetic Alliance is a coalition of more than 600 advocacy organizations serving 25 million people affected by 1000 conditions. The organization works to transform leadership in the genetics community to build capacity in advocacy organizations and to educate policymakers by leveraging the voices of individuals and families. Genetic Alliance increases the capacity of genetic advocacy organizations to achieve their missions and leverages the voices of millions of individuals and families living with genetic conditions.