For Immediate Release
MOUNT PLEASANT, SC (February 13, 2019) — Everyday life can be a challenge with a rare disease. Juggling care-related tasks alongside daily activities such as work, school, and social engagements can place a strain on patients and caregivers, limiting their ability to do the things they most want to do. For example, 7 in 10 patients and caregivers reduce or stop their professional activities due to their or their loved one’s rare disease, 2 in 3 caregivers spend more than 2 hours a day on disease-related tasks, and 8 in 10 rare disease patients and caregivers face difficulties completing daily tasks such as household chores and preparing meals.*
On Rare Disease Day – Thursday, February 28, 2019 – the International Foundation for Gastrointestinal Disorders (IFFGD) will join patients, caregivers, and others around the world to focus attention on the impact rare diseases exert on the daily lives of patients and caregivers.
Many of the nearly 7,000 rare diseases identified by the US National Institutes of Health (NIH) affect the functioning of the digestive tract. IFFGD works to support and assist patients living with both rare and common digestive conditions by starting conversations about these often difficult-to-discuss conditions, drawing global attention to the unmet needs of those affected, and working with all stakeholders towards real-world solutions.
“Bowel symptoms associated with both rare and common digestive disorders present unique difficulties for patients and caregivers,” said Ceciel T. Rooker, President of IFFGD. “Bowel functions are not easily discussed, and stigma often disrupts open and honest conversations about the medical and social needs of those affected.”
To help shed a light on the daily challenges faced by those affected by a rare digestive disorder, IFFGD will join the rare disease community in “Bridging Health and Social Care” – the slogan for Rare Disease Day 2019.
“Care for individuals with rare diseases extends beyond the doctor’s office,” said Ms. Rooker. “By raising awareness of how these conditions disrupt daily life, we can help connect health and social aspects of care to reduce their impact and enable patients and caregivers to get back to living.”
*EURORDIS. May 2017. Rare Barometer Voices: Juggling Care and Daily Life. Retrieved from https://www.eurordis.org/voices#studies
About Rare Disease Day
Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year) – the rarest day of the year – to underscore 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 and is now observed in more than 80 countries.
For more information about Rare Disease Day, visit https://www.rarediseaseday.org/.
The International Foundation for Gastrointestinal Disorders (IFFGD) is a nonprofit education and research organization dedicated to improving the lives of people affected by a chronic gastrointestinal disorder. Founded in 1991, IFFGD helps improve care by enhancing awareness, improving education, and supporting and encouraging research into treatments and cures for chronic digestive conditions.
Learn more at www.iffgd.org.