Many of the nearly 7,000 rare diseases identified by the US National Institutes of Health (NIH) affect the functioning of the digestive tract.
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MOUNT PLEASANT, S.C., Feb. 13, 2019 /PRNewswire/ -- 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 For more information about Rare Disease Day, visit https://www.rarediseaseday.org/. About IFFGD Learn more at www.iffgd.org. Media Contact:
SOURCE International Foundation for Gastrointestinal Disorders (IFFGD) |
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