Digestive Health Monthly

Welcome to the monthly eNewsletter of the
International Foundation for Functional Gastrointestinal Disorders (IFFGD)

Digestive Health Monthly - February 2018

Rare Disease Day is February 28, 2018.

While a disease is considered rare if it affects fewer than 200,000 people, according to the National Institutes of Health (NIH), having one of these diseases is not rare at all. One in 10 people is affected by a rare disease - almost 30 million people in the US and over 300 million worldwide - and nearly half of those affected are children.

On Rare Disease Day IFFGD will join together with patients in the US and around the world affected by rare digestive diseases and other rare conditions to focus attention on the needs of patients and their families.

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IFFGD Raises Awareness for

Rare Disease Day

#ShowYourRare for rare digestive disorders

Many of the nearly 7,000 rare diseases identified by the NIH affect the functioning of the digestive tract and include achalasia, Hirschsprung's disease, cyclic vomiting syndrome, intestinal pseudo-obstruction, and short bowel syndrome.

Read our Rare Disease Day awareness release and join us in raising awareness for rare digestive disorders and other rare conditions on February 28th.

Talk Rare Diseases with the NIH

Get your rare disease questions answered

Join IFFGD and the rare disease community for a Twitter chat sponsored by the NIH in preparation for Rare Disease Day. Join the conversation and get your rare disease questions answered by tweeting with #NIHChat on Friday, February 23rd at 1:00 pm EST.

We look forward to chatting with you!

Be a "Proactive Actor in Research"

Continuing from 2017 this year's Rare Disease Day theme is "Research" with the slogan "Patients are not only subjects but also proactive actors in research."

For the majority of rare diseases, few safe and effective treatments are available. By participating in research, patients contribute to the development of diagnostic tools, treatments, and cures.

Learn more about how you can participate in research and browse IFFGD's list of currently recruiting studies and clinical trials.

Gabriel's Story

"Gabriel is a brave, smart and vivacious child, who has understood very quickly the ups and downs of his medical condition. The toughest part for him and for us as well is probably the side things that have come with it, such as the rejection from kids at school (and even from schools who are afraid to receive him), the poor growth and the intolerance to many meals that cause him severe diarrhea and "accidents" with the colostomy."

Read Gabriel's story of early life with Hirschsprung's disease, a rare genetic digestive disorder.

Advocate for Rare Digestive Disorders

Too often, silence is a symptom of life with a rare disease. Nowhere has the lack of dialogue and education surrounding rare digestive disorders and other rare conditions been more harmful than on Capitol Hill.

Learn how you can make a difference by asking your House Members of Congress to cosponsor HR 1187 and support research into diagnostic tools, treatments, and cures for rare and common chronic digestive conditions.

IFFGD is a nonprofit organization. We rely on donor support to fund research and to provide reliable information and support to those affected by functional gastrointestinal and motility disorders.

IFFGD | (414) 964-1799 | [email protected] | www.iffgd.org

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