IFFGD works to inform, assist, and support people affected by functional gastrointestinal (GI) and motility disorders. For over two decades, these efforts have been made possible by the support we receive from the diverse community of patients and families, physicians, industries, and policy makers who share the common goal of seeing patient care improved.
The burdens imposed by these diseases affect not only patients and families, but also healthcare practices, and society at large. We continually work to take actions needed to raise awareness and advance understanding about these complex conditions.
Since we started, in 1991, we have worked to provide information that people could use so they could take part in improving their own health, and in finding a pathway to improved care and outcomes.
We believe that quality information plays a key role in the process of delivering quality care, and that all stakeholders including patients must work together and be actively engaged in this process.
Our commitment to these principles underlies the programs and activities that each year we are able to deliver. Whether for research, education, advocacy, or awareness, you all participate. We are pleased to thank you for your contributions as we look back at some of our activities over the past year.
Education & Support
Increased research into functional GI and motility disorders is a key issue for IFFGD. In addition to advocating for more federal dollars to support scientific advancement of these conditions, we are committed to findings ways to promote and fund investigation into better understanding in this field.
This year we began conducting an online survey of adults reporting an online survey of adults reporting a diagnosis of gastroparesis, to look at their real world experiences in living with this disorder. Working in collaboration with Henry Parkman, MD we plan to publish our findings later this year and hope to shed more light on ways to help improve their daily lives.
Last year we awarded three research grants to investigators looking at idiopathic gastroparesis. The grants were made possible by donations to IFFGD, as well as money raised by individuals who sponsored fundraisers to benefit IFFGD through the Digestive Health Alliance. These have included walks, runs, and other community events.
Fundraising efforts continue for various disorders and we hope to be able to support more research in the future.
More and more people are looking for medical information online. Increasingly, they are finding IFFGD on the Internet. Our websites address a range of topics and conditions with information that is evidence-based and accessible to a wide audience.
In 2014, we had nearly 4 million visitors on our sites. We are on track for even more visitors in 2015.
Information about a variety of topics can be found on our family websites:
Gastroparesis Website Recognized
In a review published in Gastroenterology (Vol 147 No 5, Nov 2014) of 4 websites providing patient-oriented content on gastroparesis, our site, aboutGastroparesis.org, earned the top rating. Other sites reviewed included WebMD, Medicinenet, and the National Digestive Diseases Information Clearinghouse.
We also participate on social media to engage with the community. Join our discussions at:
Our free monthly eNewsletter provides news and information updates to the digestive health community. If you haven't done so already, we in
vite you to sign up to receive this monthly communication, Digestive Health Monthly, at iffgd.org/stay-connected/join-e-news-letter.
In line with global trends, increasingly online users are accessing information with tablets and smart phones. Mobile devices now make up more than
half of online uses. We also keep in mind that our mobile applications can provide a handy tool to use in a clinical setting.
In 2014, we launched our first mobile app, IBS Info, a resource for people looking for information about IBS and chronic constipation (CC). The app is available for iOS and Android systems. In addition to medical news updates, the app covers topics drawn from our publications library relating to IBS and CC.
Our print publications provide information about functional GI and motility disorders helping people better understand their condition and more effectively work together with their healthcare providers. Our library of information contains more than 250 factsheets. Digestive Health Matters is available online as well as in print, with distribution to people in 147 countries.
Awareness & Advocacy
Through a variety of efforts, IFFGD is consistently working to increase awareness for functional GI and motility disorders. Whether through outreach with educational materials and websites or advocacy efforts on behalf of people who are affected, we are dedicated to continuing to bring these issues to the forefront of science and industry, as well as to the attention of government officials and members of the public.
Advocacy in Action
Advocating for research and advancement in Washington, DC is becoming increasingly important. By speaking on behalf of the digestive health community and bringing patient advocates to Capitol Hill, we are educating key decision makers on the needs of those with chronic digestive conditions in order to help influence support for activities at NIH, FDA, and other health and human services agencies.
IFFGD Advocacy Day 2015
The eighth annual IFFGD Advocacy Day took place on July 21, 2015. Digestive health advocates, including patients, family members, and healthcare professionals, were invited to help educate Members of Congress about the needs of the functional GI and motility disorders community.
We contacted numerous Congressional offices about the importance of research, education, and awareness of FGIMDs and discuss key issues that are most important to use for the next fiscal year. Topics included:
- House Member co-sponsorship and Senate introduction of The Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2015.
- Support for increased funding for the National Institutes of Health (NIH) to a level of at least $32 billion.
- Support for veterans in the Defense Appropriations bill by: House and Senate funding support of the Department of Defense Gulf War Illness Research Program, which provides a source of funding for functional GI disorders research.
- Support for funding for the National Pediatric Research Network Act, with funding for a pediatric FGIMD network.
DDNC Public Policy Forum
On March 1–2, 2015 IFFGD again took part in the Annual Digestive Disease National Coalition (DDNC) Public Policy Forum in Washington, DC. This yearly meeting brings us together with other organizations in the field to receive legislative updates and take part in advocacy activities, allowing us another opportunity to express the concerns of the digestive health community with Members of Congress.
Designated awareness periods encourage participation by multiple stakeholders to sponsor events to increase educational efforts around designated disorders.
IBS Awareness Month - April marked the 19th Annual IBS Awareness Month, first designated by IFFGD in 1997. This year we included a message about the diagnostic and therapeutic importance of effective doctor-patient communication, as well as a call to action for patients to take part in an online survey aimed at helping providers better meet the needs of their patients. The survey is being conducted by the University of Michigan and the Drossman Center for Education and Practice of Biopsychosocial Care, in cooperation with IFFGD.
GERD Awareness Week - Last November we observed the 16th Annual GERD Awareness Week, first designated by IFFGD in 1999. Our message was, Persistent Heartburn May Be a Sign of GERD: IFFGD reminds people of symptoms for GERD Awareness Week.
Gastroparesis Awareness Month - Last August we observed Gastroparesis Awareness Month. Our message, Lack of Awareness of Gastroparesis May Impact Medical Care, was distributed in a press release that was widely picked up by news outlets serving both the general public and medical professionals.
We have been working with the US Department of Health and Human Services and others on Capitol Hill to have Gastroparesis Awareness Month officially recognized on the National Health Observances Calendar annually during the month of August.
Providing the Patient Perspective
Speaking out on behalf of patients is at the center of our advocacy efforts. For many years IFFGD has provided this perspective to healthcare providers, industry leaders, legislators, and regulatory agencies giving a voice to patients and family members.
This past week, we participated, along with a number of IFFGD friends and advocates, in the FDA Patient Perspective, Patient-Focused Drug Development initiative, a part of the Prescription Drug User Fee Act (PDUFA). The public meeting was held to gather patient and advocate input on the impact of functional GI disorder on daily life and patient views on currently available therapies to treat functional GI disorders, such as IBS, gastroparesis, GERD symptoms despite standard therapy, and chronic idiopathic constipation.
Much was accomplished this year and we are grateful to the supporters of IFFGD who make all of this possible. We celebrate these achievements and share our successes with you and look forward to what next year will bring for all of us. Thank you for your continued support.