Advocacy

IFFGD Advocates

Too often, silence is a symptom that accompanies a functional gastrointestinal (GI) or motility disorder. Nowhere has the lack of dialogue and education surrounding these conditions been more detrimental than on Capitol Hill.

IFFGD has been a voice on the Hill for years on behalf of the digestive health community. Despite the progress we have made, federal funding for functional GI and motility disorder medical research currently lags behind other digestive conditions, and patients frequently face issues regarding access to care and availability of treatment options.

Please help fill the information gap in Washington, DC by becoming an advocate, through IFFGD, for the digestive health patient community. Your outreach to Members of Congress and the Administration will help us educate policymakers about the needs of patients and inform them of how they can take meaningful action.

It's Easy to Make a Difference Through IFFGD

IFFGD is calling on all individuals affected by functional gastrointestinal and motility disorders (FGIMDs) to join the our efforts effective dedicated to improving treatment options and finding cures for these conditions.

Use your story to raise awareness in your community, advocate for change on Capitol Hill, or fundraise for critical research activities. We bring patients, family members, friends, and healthcare providers together with IFFGD to ensure that we carry one clear, impactful message. Adding your voice to this growing chorus will help expand critical research, initiate important legislation, and facilitate the development of new treatment options.

Involvement in Shaping National Health Care Policy

We are continually present on Capitol Hill, monitoring and participating in areas important to the digestive health community. 

Congressional Testimony

Bill testifies

Each fiscal year (FY), Congress decides how much funding to provide federally supported medical research initiatives, what areas of research should be prioritized, and how much funding should be committed towards new drug approval and the monitoring of current treatment options. Whenever appropriate, the IFFGD offers testimony, either written or in person before members of Congress, which expresses the needs of functional GI and motility disorder patients and urge additional resources for NIH and FDA. For specific remarks to Congress, please visit our congressional testimony archive.

FDA and Other Regulatory Agencies Testimony

As part of our continual presence in Washington, DC, and around the United States, whenever appropriate IFFGD offers testimony to the U.S. Food and Drug Administration (FDA) and other regulatory agencies. Through either written or in person statements, IFFGD shares the perspective of functional GI and motility disorder patients. We urge consideration of the patient perspective in regulatory decisions and encourage additional resources to help meet their needs. To read specific statements to FDA and other regulatory agencies, please visit our FDA testimony archive.

VA Testimony

In 2011 the Department of Veterans Affairs (VA) recognized that there is a "Presumptive Service Connection" associated with service in Southwest Asia during certain periods and the development of functional GI disorders. IFFGD promotes expanding the understanding of health consequences of military service in the Southwest Asia theater of operations during the Gulf War and help for veterans with service connected diseases.  

Nancy Norton meets with Senator Sherrod Brown (D-OH)

Working With Stakeholders

Digestive Disease National Coalition (DDNC) – The DDNC serves as the national voice of the digestive health community by bringing patient organizations, physician societies, and industry partners together around issues of common interest. The functional GI and motility disorders patient community is well represented by the DDNC as IFFGD co-Founder Nancy Norton served as the DDNC’s Chairperson for a number of years. The DDNC actively works to shape health policy through sustained advocacy and outreach, and hosts a two-day public policy forum on Capitol Hill each year.

Alliance for a Stronger FDA – The IFFGD was one of the first organizations to sound the alarm over the lack of resources at FDA and is proud to work through the Alliance for a Stronger FDA to address this issue. 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. The Alliance is designed to be a multi-year effort to (1) assure the FDA has sufficient resources to protect patients and consumers and (2) maintain public confidence and trust in the FDA.

Nancy Norton at NIH

Working With the National Institutes of Health (NIH)

National Commission on Digestive Diseases – In April 2006 IFFGD Nancy Norton was one of sixteen members appointed to the National Commission on Digestive Diseases (NCDD). Then Director of the NIH, Dr. Elias A. Zerhouni, established the NCDD based on the mutual interest in advancing digestive diseases research shared by the NIH and the Congress. The charge of the Commission was to create a long-range research plan for digestive diseases based on the state-of-the-science and the related NIH research portfolios. The final research plan, Opportunities and Challenges in Digestive Disease Research: Recommendations of the National Commission on Digestive Diseases contains numerous recommendations for advancing functional GI and motility disorders research and is now available here.

Office of Research on Women’s Health – In March 2006 Nancy Norton was appointed by the NIH Director to a 4-year term on the eighteen member Advisory Committee on Research on Women’s Health, the advisory body of the NIH’s Office of Research on Women’s Health (ORWH). The NIH Revitalization Act of 1993 charges the Committee with advising the Director of ORWH on appropriate research activities to be undertaken by the national research institutes with respect to women’s health research. Committee members are actively involved in reviewing research priorities, the women’s health research portfolio for NIH, and the inclusion of women and minorities in clinical research.

National Institute of Diabetes and Digestive and Kidney Diseases – In October 2001, Nancy Norton was appointed by the NIH Director to a 4-year term on the National Diabetes and Digestive and Kidney Diseases Advisory Council, the advisory body of NIH’s National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). This council serves to advise NIDDK about its research portfolio, and to take second level peer review of research grant applications that have been scored by initial review groups. Council members also serve as liaisons between the research communities they represent and the NIDDK.

About IFFGD
Leadership
Nancy J. Norton, IFFGD President
Advisory Board
Board of Directors
Editorial Board Members
Our Mission
Awareness Activities & Accomplishments
Public Education & Awareness
Professional Education & Awareness
Year in Review
-2014
-2012/2013
Advocacy Activities
Legislative Successes
FGIMD Act (Functional Gastrointestinal and Motility Disorders Research Enhancement Act)
Congressional Testimony
FISCAL YEAR 2016
FISCAL YEAR 2013
FISCAL YEAR 2012
FISCAL YEAR 2010
FISCAL YEAR 2009
FISCAL YEAR 2008
FISCAL YEAR 2007
FISCAL YEAR 2006
FISCAL YEAR 2005
FISCAL YEAR 2004
FISCAL YEAR 2003
FDA and Other Testimony
Written Comments to FDA June 29, 2015
Oral Comments to FDA May 11, 2015
Comments to FDA July 16th, 2014
Written Comments to Noridian October 24, 2013
Testimony to FDA October 25, 2012
Testimony to FDA September 12, 2012
Testimony to FDA December 13, 2011
Testimony to FDA December 2, 2010
Testimony to FDA April 23, 2002
Comments to FDA November 9, 2000
Testimony to FDA June 27, 2000
Testimony to FDA June 26, 2000
Capital Hill Advocacy Day
Research
IFFGD Research Awards
IFFGD Symposium reports
2013 Professional Symposium
10th Symposium Report
10th Symposium Audio Recordings
More from the 10th Symposium on FGIDs
2011 Professional Symposium
9th Symposium Report
2009 Professional Symposium
2007 Professional Symposium
7th Symposium Report
2005 Professional Symposium
6th Symposium Report
2003 Professional Symposium
5th Symposium Report
2002 Conference - Advancing the Treatment of Incontinence
Funding
Corporate Support
Our Research Funding Needs
IFFGD Standards for Collaboration
Industry Council
Supporters
Code of Ethics
Contact Us
Media Contact
Donation

Advocacy Effort

capital hill day s

Involvement in Shaping National Health Care Policy

IFFGD is a voice on Capital Hill working with the digestive health community.

Advocacy Activities, Legislative & Regulatory

Legislative Successes

Congressional Testimony