CHES cares...

Comprehensive Health Education Services (CHES) since 2012, has provided programming and support services to members of the ultrarare coagulation disorder community when it hosted the very first F7 Retreat supported by an educational grant from Novo Nordisk in Highland, NY for families affected by FVII deficiency. In 2016 and 2019, CHES was honored to provide the Glanzmann’s Thrombasthenia Symposia, supported by an educational grant from Novo Nordisk. These two programs combined in 2020 to form One Drop: THE Rare Bleeding Disorder Consortium.

Over the last 10 years, we have listened to, learned from, and supported our program participants who have become like family to us.

In preparation for this article, we reached out to our families to ask them what they felt was the most important topics to be answered by healthcare professionals; information they wished to share with others new to an ultra-rare diagnosis, what they wished they had known, and what they still would like to learn.

A very special thank you to our program participants for their insightful questions, years of trust, and support! It is because of YOU that programs such as One Drop are so successful. And of course, they would not be possible without the generous support of Novo Nordisk.