FDA Patient Listening Session on Mastocytosis

Nov 02, 2021

FDA Patient Listening Session on Mastocytosis on September 28, 2021.

Session Goals

The goals of this session are to familiarize the FDA with the serious impact mastocytosis has on quality of life overall, particularly in respect to the ability to carry out activities of daily living, e.g. go to school, work, and socialize. In addition, patients and families carry the burden of dealing with polypharmacy with high out of pocket costs, relentless symptoms for which there is very little effective relief and depression, anxiety and social isolation because of the unpredictability of the onset of disabling symptoms. The need for novel and effective therapies for mastocytosis to be developed and approved is urgent. 

Thank you

Thank you to Susan Chittoran and Alec Halsne for their expert guidance and support, the other members of the FDA for joining us to learn more about mastocytosis, and most of all, thank you to the 8 patient and family groups who took the time to share the story of their journey with their disease. We salute them for their courage and thank them for their efforts so that all patients in our community may benefit.