Action alert! Ask your clinicians & geneticist to write a letter to CDC to support an ICD Code for Syngap.

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Mike is the co-founder & Managing Director of SRF.

Dear Parents and caregivers of SynGAP patients, three things:  

  1. If you don’t know what an ICD-10 code is and why it matters, please read our earlier post about this critical topic:
  2. As you may have heard SRF’s Medical Director, Dr. Hans Schlecht has been advocating for an ICD-10 code for Syngap for a long time and in March, 2020 we hit a milestone with Dr. Smith-Hicks from KKI presenting to the CDC about the need for a SynGAP-specific code.  We can’t thank them both enough.
  3. The CDC is taking letters of support until May 18th.  Please ask your clinicians and geneticists to write a letter of support.  They can find a draft and some background with this link (careful it’s case sensitive) or you can just share this blog post with them.

Thank you for helping SRF help our patients.  If you have asked your team to write a letter please let us know via the contact us page!