NEW MINI INFO SESSION!

We are pleased to announce a new mini session with genteticast Stace Kallish from the University of Penn.  We will be covering POH and family planning.   This session will take place on  December 7, 2021 at 5:00 p.m. EST.  If you are interested om receiving more information and you are not in our data base please fill out a patient information form so you can be added to our list and receive information about registering for this event.  These is no charge for this session.

Please check out the Research Updates tab for all information shared at the Virtual Symposium.

The POHA hosted a virtual symposium on January 31, 2021. It was attended by members from 5 countries and 12 US states!  Dr. Fred Kaplan and Dr. Eileen Shore both gave infomrative presentations which will be shared once the video is available.  The particpants  also engaged in breakout rooms which connected them with other families and patients.  We will be offering more sessions in the upcoming months for our community to meet for topic specifici discussions.  Stay tuned!

 

 

Rare Disease Awareness Day is February 28th!  How will you make others aware of POH?  Did you know the POHA funds a full time researcher every year by dedicating $50,000 to the University of Penn?  Can you help us continue this pracitce as a dedicated researcher means so much to finding out all we can about POH?  Please visit our FaceBook page for ideas on how you can help.

 

 

About the POHA: