Neurodegeneration with Brain Iron Accumulation (NBIA) Community

Meet, discuss & support other patients or families living with Neurodegeneration with Brain Iron Accumulation (NBIA). Contribute to topics, or just share what's on your mind


Million Dollar Bike Ride for NBIA.

My name is Sue and I am one of the moderators for the Pitt Hopkins Syndrome community on RareConnect. For the last 2 years I have ridden in the MDBR to raise awareness and funds for research for PTHS with Judy and Liz. This year Judy, her family and I are riding for NBIA. We decided to do this as a little girl who was being tested for PTHS was discovered to have NBIA-BPAN.We wanted to pay it forward for all the help we have had from the Rare Disease Community and show the family our support. Every donation we get will be doubled by Penn University up to $50,000. There are only a few of us riding so all support will be very welcome.Please look at : for my page and for Judy’s page. You can even start a fundraising page yourself, even if you cannot ride. All money raised to $50,000 will be doubled!