by Madaline Spencer | Jun 11, 2025
Jean Swidler, Executive Director for End The Legacy, discusses current challenges facing the amyotrophic lateral sclerosis (ALS) and frontotemporal dementias (FTD) communities. ALS is a motor neuron disease that leads to problems with muscle control and...
by Madaline Spencer | Jun 10, 2025
Nate Milam II, Patient Advocate for the Histiocytosis Association, discusses his diagnostic odyssey with histiocytosis. Histiocytosis is a rare hematologic disorder characterized by the overproduction of histiocytes, a type of white blood cell. In people...
by Madaline Spencer | Jun 9, 2025
Pangkong Fox, PhD, Science Engagement Director at the CACNA1A Foundation and rare disease mom, discusses patient advocacy in CACNA1A-related disorders. CACNA1A-related disorders are a group of rare genetic neurological disorders caused by mutations in...
by Jake Ciszewski | Jun 6, 2025
Rare disease awareness days serve an important purpose of informing the public, creating community, and raising money to support funding towards new research and treatments. Below is a calander containing rare disease awareness days and months as well as more...
by Madaline Spencer | Jun 5, 2025
Mike Graglia, Co-Founder & Managing Director of the SynGAP Research Fund and rare disease dad, discusses the current landscape of SYNGAP1-related disorders (SRD). SRDs are a rare genetic developmental and epileptic encephalopathies (DEE)...
