Our next Community Zoom will be Sunday, January 28th @ 12:00 EST. During this Zoom our families will have the opportunity to meet Dr. Rachel Heilmann, The MED13L Foundation’s Director of Research Development, and Community Engagement.

A message from Rachel –
“I am excited to begin my full time role concentrating on preparing and engaging families caring for those with MED13L for research opportunities. In the past year, I’ve had the pleasure to meet and engage with many of you and your children through blood collections and meetings. I am continuously amazed at the kindness in the rare community and especially within this one. I am by background a Clinical Pharmacy Specialist, with a long track record of providing clinical patient care, invested in qualitative outcomes research, and leading teams of Clinical Pharmacy Specialists in a large healthcare system. I spent the last year intensively immersed in fellowship at COMBINEDBrain and working very closely with the MED13L Foundation leaders, researchers, and clinicians. I come to you having known the grief of receiving a diagnosis for an ultra rare neurodevelopmental disease for my own child, who ultimately died from it. I have much to learn about MED13L, the individuals impacted by it, but look forward to turning you and your children’s experiences into evidence.”

Read more on Facebook event: https://www.facebook.com/events/s/community-zoom-meet-dr-rachel-/1072295820564702/?mibextid=RQdjqZ