Coats disease, is a rare retina condition diagnosed primarily in children. Symptoms may include, eye drift, blurry vision, the appearance of a white or silver looking retina, and retina detachment. Twenty years ago, parents Ed and Tina, founded the Jack McGovern Coats’ Foundation after their son Jack was diagnosed with it.
The Foundation, according to a press release, has created International Coats’ Disease Patient Registry that now includes nearly 500 patients across 49 countries, described as the only dedicated source of Coats’ Disease-specific data for researchers. In addition, the foundation has developed an International Doctor Directory featuring 130 retina specialists in more than 20 countries to help families find experienced care.
This organization has also funded scientific research on Coat’s Disease and provided education grants to retina specialists to ensure that there are physicians focusing on tis rare condition.
In a press release celebrating their 20th anniversary the foundation highlighted expanded patient support through peer-to-peer programs connecting families across 40+ countries, along with partnerships with major institutions such as Stanford University, Mass Eye and Ear, Duke University, UC Davis, Genentech, Johns Hopkins Medicine, and the Macula Society. Alongside these efforts, the foundation has organized events and produced educational resources for patients, families, and healthcare providers.
The foundation concludes that its impact reaches well beyond research funding—supporting people and families from the moment of diagnosis with education, referrals, virtual support options, and a global community committed to ensuring that no one faces Coats’ Disease alone.
More information can be found at : Jack McGovern Coats’ Disease Foundation.
