Government and Educational Links 

Food and Drug Page

  1) Lookup - Ingredients in medications
National Institutes of Health consumer information on diseases and conditions
Academy of Nutrition and Dietetics   2) Academy of Nutrition and Dietetics
Food and Drug Administration     3) As a regulatory agency, FDA publishes rules that establish or modify the way it regulates foods, drugs, biologics, cosmetics, radiation-emitting electronic products, and medical devices--commodities close to the daily lives of all Americans. FDA rules have considerable impact on the nation's health, industries and economy. These rules are not created arbitrarily or in a vacuum. They are formed with the public's help
USDA  

4) www.usda.gov Visit USDA's Newsroom

is the official Web site of the United States Department of Agriculture.

 USDA National Nutrient Database for Standard Reference of food ingredients
                            National Nutrient Database for Standard Reference
  5) Search the USDA National Nutrient Database by food product, such as dinner roll,
Search the USDA National Nutrient Database by single nutrients, such as calcium or niacin

 

FDA Searchable References and Databases

FDA Consumer Protection and Information   Newsroom 

 

Health Links

HHSThe Department of Health and Human Services (HHS)     1) The Department of Health and Human Services (HHS) is the United States government's principal agency for protecting the health of all Americans and providing essential human services, especially for those who are least able to help themselves.

National Institutes of Health

 

2) The National Institutes of Health (NIH), a part of the U.S. Department of Health and Human Services, is the primary Federal agency for conducting and supporting medical research.

Helping to lead the way toward important medical discoveries that improve people's health and save lives, NIH scientists investigate ways to prevent disease as well as the causes, treatments, and even cures for common and rare diseases.

NIDDK

 

3) Conducts and supports basic and clinical research on many of the most serious diseases affecting public health.

Until May 19, 1972, the National Institute of Arthritis and Metabolic Diseases; until June 23, 1981, the National Institute of Arthritis, Metabolism, and Digestive Diseases; and until April 8, 1986, the National Institute of Arthritis, Diabetes, and Digestive and Kidney Diseases.

  • National Commission on Digestive Diseases

Opportunities and Challenges in Digestive Diseases Research:

Digestive Diseases Research

Public Comments were open from February 8–March 8, 2008

Comments submitted by CSA

PDF version of draft research plan: (PDF-4MB)

508 compliant HTML version of draft research plan: (HTML)

Celiac Disease Awaremess Campaign  

4) 2004 Consensus Development Conference on Celiac Disease

In 2004, Celiac Support Association (CSA) collaborated with the NIH to launch this campaign to heighten awareness of celiac disease among health care professionals and the public.

The campaign website (www.celiac.nih.gov) provides access to:

  • educational materials and services
  • current NIH research about celiac disease
  • additional campaign information and resources, including an e-newsletter
CDC  

5) The Center for Disease Control and Prevention is one of the major operating components of the Department of Health and Human Services. CDC′s Mission is "To promote health and quality of life by preventing and controlling disease, injury, and disability". CDC′s Vision for the 21st Century is "Healthy People in a Healthy World—Through Prevention".

  • The Centers for Disease Control (CDC) is encouraging screening for colorectal cancer, endorsed by Katie Couric and Morgan Freeman, in their Screen for Life campaign.
  • Tracking Family Health History
  • It is helpful to talk with family members about your health history, write this information down, and update it from time-to-time. The Centers for Disease Control and Prevention website provides helpful tools including “ My Family Health Portrait.”
Logo to be added soon  

 Health Resources and Services Administration (HRSA)

 The Federal Government Source for Women's Health Information  

 womenshealth.gov

 

Legislation Links

THOMAS

 

1) thomas.loc.gov provides information on legislation including bill numbers, text, status, sponsors, etc.

USA.gov

   

2) USA.gov is the U.S. government's official web portal to all federal, state and local government web resources and services.

  • Learn about the Congress and the Legislative Process

 

Legislation of Interest

Contact your Senator's, Representatives or the media about legislative issues.

Gluten-Report (FDA Health Hazard Assessment Report May 2011)

Past Legislation on Gluten-free Labeling

The Food Allergen Labeling and Consumer Protection Act of 2004, Title II of Senate Bill S.741 became law on August 2, 2004 with President George W. Bush’s signature. The following is a summary of the bill’s provisions related to Voluntary food labeling using the term “gluten-free”.

GLUTEN-FREE LABELING

"Not later than two years after the date of enactment, the Secretary of Health and Human Services, in consultation with appropriate experts and stakeholders, shall issue a proposed rule to define, and permit use of, the term 'gluten-free' on the labeling of foods. Not later than four years after the date of enactment, the Secretary shall issue a rule to define, and permit use of, 'gluten-free' on the labeling of foods." Section 206.

Past CSA involvment with Gluten-Free Labeling

 

Addins:

 

Advocacy In Action
CSA is part of the following Advocacy Groups

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 Support Association members are encouraged to attend:

The 24th annual 2014 Digestive Disease National Coalition Public Policy Forum (PPF), will be held March 2 and 3 of 2014, in Washington D.C. Registration iwww.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.

 
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.

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. 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
Broad Stakeholder Coalition Also Requests Speedy Appointment of New FDA Commissioner


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.