CSA Invited to Provide Input on the Development of a New, Five-Year Strategic Plan for the NIH
The NIH mission, goals and development will be guided by this strategic plan, with the goal of this five year plan to outline a vision for biomedical research that ultimately extends healthier life and reduces illness and disability.
You can provide input, use the following links for details and to comment. Make comments now.
Comment deadline for the HIH survey is August 16, 2015 at 11:59 PM EDT.
The Celiac Support Association is invited to provide input on the development of a new, five-year Strategic Plan for the National Institutes of Health (NIH). With a major revamping of healthcare research and treatment involved in major changes at the national level, it is vital that the voice of individuals with celiac disease and their families share their concerns and desires, assuring that celiac disease factor in to the policy changes to assist in guiding the NIH leadership in the future.
CSA has, for almost forty years, supported research by the National Institute of Diabetes and Digestive and Kidney Disease (NIDDK) within the NIH and has been invited by the NIH Deputy Director, Dr. Larry Tabak, in a letter to CSA “to encourage the CSA officers and membership to respond to this national, proposed five year strategic plan survey.” Make comments now.
NIH senior leadership and staff have develops a proposed framework for the Strategic Plan that identifies areas of opportunity across all biomedicine and unifying principles to guide NIH’s spurt of the biomedical research enterprise. The aim is to pursue crosscutting areas of research that span HIH’s 27 Institutes, Centers and Offices. To review the framework of the plan click here.
The mission of NH involves Fundamental Science, Health Promotion/disease Prevention and Treatment/Cures, with a focus on the Unifying Principals of Setting and Establishing Health Priorities along with Enhancing Stewardship. Dr. Griffin P. Rogers, Director NIDDK, NIH and the US Department of Health and Human Services reflects on this same effort of dealing with change in his annual report, stating that “the organization must be committed to support the areas of research and translating scientific discoveries into improvement in the health and quality of life of all people.”
“The NIDDK and NIH have long looked to CSA leadership and CSA membership for advice from the perspective of the individual diagnosed with celiac disease and their families and we encourage all members to take time to respond and assist the NIH in development of their new five year strategic plan” states Mary A Schluckebier, CSA Executive Director.
The work of CSA in the Washington area has assisted as a guide in the proposed revolution of health care and CSA encourages individual participation in the survey. The CSA leadership is pleased to offer assistance in completing the survey and happy to discuss any concerns or issues surrounding the survey. Contact the CSA office for more information at 877-272-4272 with emails directed to firstname.lastname@example.org.
There are 10,000 known diseases, yet the U.S. only has treatments for 500 of them.
Snagged by gluten in a food or medicine? Link to>>> Report to governmental officials
- Share your opinion on gluten-free drugs regulated by the FDA?
- Please send comments to pass along to email@example.com.
Research Pages include:
International Celiac Disease Symposium
Digestive Disease Week Washington DC Program on Celiac Disease and Gluten-related Disorders...
Gastroenterology Regulatory Endpoints and the Advancement of Therapeutics
Workshop in Silver Spring, MD Devoted to Celiac Disease non-dietary Therapeutics
Learn more about the FDA Center for Drug Evaluation and Research (CDER) Gastroenterology Regulatory Endpoints and the Advancement of Therapeutics
View and Download Presentations (GREAT 3)
Free Download - Limited time only
CSA's 47 page 2015 Gluten-Free Summer Recipe E-Book,
with a Gluten-Free Camping Shopping List, and photo of each recipe.
2015 Gluten-Free Spring Recipe E-Book
45 pages * Gluten-Free Candy list
* Shopping Tips & Grocery List
* Gluten-Free Entertaining Ideas
2014 Gluten-Free Holiday E-Book
64 pages * 40+ new tested recipes * Menu plans * Holiday gluten-free candy list * Tips from the CSA nutritionist & consultants
To order the 2014 Holiday and 2015 Spring Recipe Collections, call the CSA office at 877-272-4272.
The Celiac Support Association (CSA) proudly announces our grant award for Phase I of the Platform for Engaging Everyone Responsibly (PEER).
- See the Genetic Alliance press release for more information and a list of Phase I awardees.
Your Participation Makes it Possible to
- provide the best possible care to patients affected by celiac disease and other gluten-related disorders
- improve methods in studying our disease
- achieve deeper understanding of gluten-induced conditions
- find new treatments
- create new studies
- improve digestive function and overall health
CSA members have received Lifeline Issue 2 2015
What is Celiac Disease?
Celiac disease is a COMMON, genetically linked autoimmune disease. An environmental STRESS can activate celiac disease. In people with celiac disease, gluten exposure evokes an immune mediated response throughout the body generally with measurable damage to the intestinal lining. Some of the most common symptoms are joint pain, anemia, diarrhea, constipation, fatigue and irritability.
Link to symptoms . . .
Enjoy and share this public service announcement...
• Gluten-Free Labeling Webinar - USA Labeling Today
• "FDA Voluntary "Gluten-Free" for Food Labeling" August 5, 2014
• The FDA Health Hazard Assessment for Gluten Exposure in Individuals with Celiac Disease: Determination of Tolerable Daily Intake Levels and Levels of Concern for Gluten
• FDA Small Entity Compliance Guide to Gluten-free Labeling
The Celiac Support Association® is the major non-profit supporting those with celiac disease and related disorders. Through our chapters, resource units, and members, we provide research-based perspectives for optimal health.
Our support groups foster a significant improvement in a member's quality of life as validated by independent research.
Did You Know?
• 1 in 141 is the estimated prevalence of Celiac Disease in the US.
• These companies will donate to CSA while you shop.
THE BIG QUESTION: What is on the label?
THE ANSWER: Not enough information!
Is a potential gluten source ingredient present in product or processing?Even the manufacturer may not know.
Common inactive ingredients purchased on the open market
which may include gluten:
The CSA position is to advocate that manufacturers declare the name and derivative* source of all excipients in drug product on the official label.
* Derivative source means the botanical, animal, or other source of origin.
The results of the CSA survey taken in 2013 shows that our members take an average of 9 pills per day. In 2007 the average was 8 pills per day.
The most pills (prescriptions and supplements) taken by a member in one day was 53.
Tell us about your experience. Share it at firstname.lastname@example.org