Rare Disease Report

IFFGD Will Participate in Rare Disease Day to Support Rare Digestive Disease Patients

FEBRUARY 12, 2018
Kaitlynn Ely
The International Foundation for Functional Gastrointestinal Disorders (IFFGD) will participate in Rare Disease Day on February 28, 2018, with efforts to support patients affected by a rare digestive disease globally.

Annually, on the last day of February, more than 80 countries worldwide observe Rare Disease Day to bring awareness to communities, encourage research in the field, and recognize management of rare diseases as a global health challenge.

Founded in 1991 by Nancy and William Norton, IFFGD is a non-profit education and research organization that informs, assists, and supports people affected by functional gastrointestinal and motility disorders.

The organization uses donations gifted by thousands of individuals to directly fund grants and recognition awards to basic and clinical scientists. IFFGD also engages patients, families, physicians, practitioners, investigators, employers, regulators, and others to broaden the understanding of gastrointestinal disorders.

While IFFGD focuses on chronic digestive conditions, researchers associated with the organization also recognize the need for effective treatment for rare diseases. They find that public awareness through Rare Disease Day is key to advancing research and improving patient care.

“Greater awareness for and understanding of these conditions can only come from research that involves the patient as a key stakeholder,” said Ceciel T. Rooker, Executive Director of IFFGD, in a press release.

Achalasia, Hirschprung’s disease, cyclic vomiting syndrome, intestinal pseudo-obstruction, Levator syndrome, Rumination disorder and short bowel syndrome account for some of the many rare diseases affecting the digestive tract.

Conditions like achalasia and rumination disorder are not genetic and are rather the result of a previous illness. Physicians typically treat these diseases with behavioral therapy as there is no other clinical treatment available.

Patients with Hirschprung’s disease, intestinal pseudo-obstruction, and short bowel syndrome must undergo surgery that often do not entirely cure the patient of the disease.

Currently, there are few safe and effective treatments that manage rare digestive diseases. In addition, many patients go undiagnosed and receive inadequate care for years before receiving appropriate treatment.

IFFGD finds motivation in this year’s Rare Disease Day slogan – “proactive actors in research” – and is committed to advancing research and empowering rare disease patients.

The organization also recommends rare disease patients have successful relationships with their healthcare providers to find the most effective treatment to manage their long-term digestive disorders.

“By participating in research, patients help to shape the future of the care and treatment of rare diseases,” Rooker said.

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