Back from New Jersey where Steven and I attended the second (I hope annual) NORD event for aHUS patients and families. We met some great people at the kick-off dinner Friday night and conversation was lively and constant. For many, it was the first time meeting others fighting the same fight and celebrating the same victories.
On Saturday, about 30 of us gathered for an educational presentation from Dr. Ken Lieberman, an aHUS expert. Dr. Lieberman speaks very conversationally and his segment quickly evolved into a much appreciated Q&A.
Lisa Phelps, NORD and Sandy Pelkey, Alexion also presented, offering valuable information and patient and caregiver resources.
I was honored to speak on behalf of The Foundation for Children with Atypical HUS and hope that we soon see new faces onboard. We definitely want to keep the conversation flowing!
The majority of patients present had adult onset aHUS and several had just been diagnosed this year. Almost everyone is being treated with Soliris.
We learned that today, the time span between symptoms, diagnosis and treatment is about a week. This is an amazing breakthrough, and proof that new medical research and answers are always in the works.
Many thanks to NORD for providing patients and families time to meet and bond. The opportunity to hear from experts, in a safe setting, together, is invaluable.