by Peter Ciszewski | Jun 29, 2021
Nasha Fitter, CEO of the FOXG1 Research Foundation and Vice President of Rare Disease at Ciitizen, describes what it is like for parents of children with rare diseases and gives advice to parents whose children have just been diagnosed. Raising a child with a...
by Peter Ciszewski | Jun 28, 2021
Arnold Gammaitoni, PharmD, Vice President of Medical and Scientific Affairs, Zogenix, gives an overview of rare epileptic encephalopathies such as Dravet syndrome and Lennox-Gastaut syndrome. Dravet syndrome is a rare neurological condition that usually appears...
by Peter Ciszewski | Jun 25, 2021
William D. Tap, MD, Chief of the Sarcoma Medical Oncology Service at Memorial Sloan Kettering Cancer Center, discusses the signs and symptoms of tenosynovial giant cell tumors (TGCT). TGCT are a group of rare, benign tumors that involve the synovium, bursae,...
by Peter Ciszewski | Jun 23, 2021
Nasha Fitter, CEO of the FOXG1 Research Foundation and Vice President of Rare Disease at Ciitizen, gives an overview of FOXG1 syndrome and how it is diagnosed. As Ms. Fitter explains, FOXG1 syndrome is a neurological condition characterized by impaired...
by Peter Ciszewski | Jun 22, 2021
Arnold Gammaitoni, PharmD, Vice President of Medical and Scientific Affairs, Zogenix, discusses survey data demonstrating benefits of fenfluramine for the treatment of Dravet syndrome from caregivers’ perspectives. This data was presented at the AAN 2021...
