The HCMA was informed yesterday that the NIH will be shutting down its HCM program. This news will be of great concern to those currently being treated under any NIH protocol. Letters are being sent out from the NIH to all parties who participated in any protocol and were actively being seen at the NIH.
This is a major event for those families who had been seen at the NIH for many years. We know many families will need to seek out the care of HCM specialists and we are preparing ourselves to handle all of your needs.
The closure of the NIH’s HCM program brings to an end an era of research that had some amazing highs and some unfortunate lows. We can thank the early years of the program for marked advances in our understand of HCM and to the creation of the myectomy. Sadly, the program is being closed after 8 years of many questions and problems.
If you are currently being seen at the NIH and have specific questions please contact them directly. When we have more information it will be posted on the board.
Sincerely,
Lisa Salberg
This is a major event for those families who had been seen at the NIH for many years. We know many families will need to seek out the care of HCM specialists and we are preparing ourselves to handle all of your needs.
The closure of the NIH’s HCM program brings to an end an era of research that had some amazing highs and some unfortunate lows. We can thank the early years of the program for marked advances in our understand of HCM and to the creation of the myectomy. Sadly, the program is being closed after 8 years of many questions and problems.
If you are currently being seen at the NIH and have specific questions please contact them directly. When we have more information it will be posted on the board.
Sincerely,
Lisa Salberg
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