Rare Bleeding Disorders
CHES has a well-established reputation for providing quality educational programs, all dedicated to the smaller subsets of the rare or orphan bleeding disorders community. Since 2012, we have offered program experiences for those with rare bleeding disorders to include FVII deficiency and Glanzmann’s Thrombasthenia.
In 2019, these programs were combined to create One Drop, an Ultra Rare Bleeding Disorders Consortium, which allows CHES to better serve the ultra rare bleeding disorders community as a whole.
We are thrilled to expand programming to our extended family members of the bleeding disorder community. We have been able to offer molecular sequencing studies with Dr. Diane Nugent at our 2017-2018 FVII Retreats to increase understanding and better treatment of bleeding symptoms. It has been an honor to offer this to our participants.
They share these comments about their CHES experience:
“This program means power by way of education and building a nationwide 24/7 support system of lifelong friendships with others who truly understand”.
“Life changing! The curators created a loving and warm space for us to blossom!”
