Advocacy Efforts

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
www.ddnc.org
The Digestive Disease National Coalition (DDNC) is an advocacy organization comprised of the major national voluntary and professional societies concerned with digestive diseases. The DDNC focuses on improving public policy and increasing public awareness with respect to the many diseases of the digestive system. The DDNC was founded in 1978 and is based in Washington D.C.

DDNC Public Policy Forum   Celiac Sprue Association members are encouraged to attend:
  
The 23rd annual 2013 Digestive Disease National Coalition Public Policy Forum (PPF), will be held March 3 and 4 of 2013, in Washington D.C. Registration is currently open at www.ddnc.org.  Please note that you must make your own reservations at the Phoenix Park Hotel. Please call 1-800-824-5419 to make your reservation.

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

The Digestive Disease National Coalition, the leading public policy advocacy organization in our nation's capital for persons affected with digestive diseases, invites you to participate in our 23rd Annual Public Policy Forum on March 3 - 4, 2013 in Washington, DC.

This annual event brings together patients, health care providers, industry representatives, lawmakers and their legislative staff for two days of educational programs, legislative updates and advocacy training. Our objective is to brief participants from around the country on Federal health care legislation and policy and provide the opportunity to educate Members of Congress on issues of concern to the digestive disease community.

With Congress considering a major health care overhaul, you must make your voice heard on Capitol Hill to ensure that any upcoming reforms improve health outcomes for the digestive disease patient community.

Click here to view the 2013 Public Policy Forum agenda.

Don't miss this opportunity to shape our nation's future health care policy.

To RSVP for the Public Policy Forum, please complete the following:

1. Click here to register online or print out the completed registration form and fax it to the DDNC national office at (202) 546-7105. Registration closes February 17.

Note: You will receive confirmation of your registration 2-3 business days after you register. If you do not receive confirmation, please contact the DDNC national office.

2. Make your reservations at the official Public Policy Forum hotel, The Phoenix Park Hotel on Capitol Hill, by calling 800-824-5419 or (202) 638-6900.
Phoenix Park Hotel
520 North Capitol Street, NW
Washington, DC 20001
800-824-5419
www.phoenixparkhotel.com

This year, in order to increase attendance, the DDNC has made available a number of stipends to cover travel and attendance costs. For more information or to apply, click here to apply online or print out the completed form and fax it to the DDNC national office at (202) 546-7105.

Questions may be directed to the DDNC National Office, (202) 544-7497.

  

      

Alliance for a Stronger FDA
Alliance for a Stronger FDA
www.strengthenfda.org
The Alliance for a Stronger FDA unites a broad group of patient groups, consumer advocates, biomedical research advocates health professionals and industry to work to increase FDA‘s appropriations.  It is supported by leading public health advocates, including three former HHS Secretaries and seven FDA Commissioners. 

 

Alliance Urges President-Elect Obama to Increase Funding for FDA
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Genetic Alliance
Genetic Alliance
www.geneticalliance.org
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.

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