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January 2019 Newsletter

Click here to download the January newsletter from the Jack McGovern Coats’ Disease Foundation! January 2019 Newsletter  


Happy New Year!

Happy New Year from the Jack McGovern Coats’ Disease Foundation! Dear Friends, As we reflect back on our efforts in 2018 to increase the impact of the Jack McGovern Coats’ Disease Foundation, we are so grateful for the support of our Coats’ families, friends, and patients around the globe! Together, we have made progress in […]


First Annual 5K/1K Cure Coats’ Run

Check out video from this past October’s 5k/1K Cure Coats’ Run! We can’t wait until next year’s event – stay tuned for more info!  


New Study Finds Orphan Drug Exclusivity Working as Intended

New Study Finds Orphan Drug Exclusivity Working As Intended, On-Market Orphan Drug Prices Rise Slower than Common Drugs


NORD RareInsights™ Releases New Fact Sheet on the Orphan Drug Act

RareInsights is a NORD initiative to expand public knowledge of rare diseases and translate that knowledge into real-world solutions for patients and families. The Orphan Drug Act (ODA) of 1983 is a federal law that incentivizes biopharmaceutical companies to develop drugs and biologics, know as “orphan drugs,” for individuals with rare diseases. Prior to the ODA, […]


National Tissue Biobank – A message from the director, Dr. Akrit Sodhi

Hear Dr. Akrit Sodhi present the latest in research for finding a cure for Coats’ Disease The Jack McGovern Coats’ Disease Foundation Board is pleased to announce our continued commitment to fund the expenses related to tissue collection by donating $25,000 this year to the Wilmer Eye Institute, establishing the Jack McGovern Coats’ Disease Foundation […]


Beacon of Hope

US Lacrosse Magazine recently shared Jack’s journey with Coats’ Disease in their November issue   You can read the article here! PDF Version    


Here are some snapshots from our first annual Cure Coats’ 5K/1K Fun Run!

We are so proud of our first annual Cure Coats’ 5K/1K Fun Run this October! Congratulations to all of our medal winners, as well as a big THANK YOU to everyone who came out to run, walk, sponsor, volunteer, and do your part in finding a cure for Coats’ Disease!  Here are some pictures from […]


Images from the 2018 Golf Tournament

Check out photos from the 2018 Jack McGovern Coats’ Disease Foundation Golf Tournament! Thank you to all who joined us on August 23, 2018 in the fight in finding a cure for Coats’ Disease!


UPDATE YOUR INFORMATION: And, nominate others!

UPDATE YOUR INFORMATION: And, nominate others! ________ The Jack McGovern Coats’ Disease Foundation is proud to announce new updates to our website. Since 2006, the Foundation has made great strides in raising awareness and funding pivotal research to better understand and treat this rare disease. With our new website, we’ve introduced a range of new […]