While a disease is considered rare if it affects less than 200,000 people in the United States, according to the National Institutes of Health (NIH), having one of these diseases is not rare at all. One in 10 Americans is affected by a rare disease – almost 30 million people – and nearly half of those affected are children.
Many of the nearly 7,000 rare diseases identified by the NIH affect the functioning of the digestive tract, including achalasia, Hirschsprung’s disease, cyclic vomiting syndrome, intestinal pseudo-obstruction, and short bowel syndrome. Few safe and effective treatments are available for those affected by these conditions and many suffer for years before obtaining an accurate diagnosis and appropriate care.
On Rare Disease Day, February 28, 2018, the International Foundation for Functional Gastrointestinal Disorders (IFFGD) will join together with patients in the U.S. and around the world affected by rare digestive diseases and other rare conditions to focus attention on the needs of patients and their families.
IFFGD is committed to advancing research and empowering patients to be “proactive actors in research” – the slogan for Rare Disease Day 2018. “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. “By participating in research, patients help to shape the future of the care and treatment of rare diseases.”
Rare Disease Day takes place every year on the last day of February to bring attention to the nature of rare diseases and encourage recognition of these conditions as a global health challenge. This awareness event was first established in Europe in 2008 by EURORDIS (Rare Disease Europe) and is now observed in more than 80 countries.