The Penn Medicine Orphan Disease Center (ODC) will host the 8th Annual Million Dollar Bike Ride on Saturday, June 12, 2021 to raise money for rare disease research. The Million Dollar Bike Ride brings over 750 cyclists and volunteers to Penn’s campus to ride either...
#Rareis Scholarship Fund- Deadline May 7, 2021 @ 3:00 p.m CDT The EveryLife Foundation for Rare Diseases is pleased to open applications for the second year of the #RAREis Scholarship Fund. Thanks to the support of Horizon Therapeutics plc, one-time awards of $5,000...
Just the title of this Japanese article is intimidating, however, the information it contains is valuable. HPS type 2 can exhibit failure of the immune system to protect the body adequately from infection. Type 2 like all other HPS types has ocular albinism (OCA)....
International Albinism Awareness Day (IAAD) is on Sunday, June 13, 2021. This year’s theme and hashtag is #StrengthBeyondAllOdds. On this day, we would like to showcase how resilient and powerful those with albinism are. It is a day to share our voice, show our...
When we first laid eyes on our baby girl Adalynn (Addy) it’s safe to say we, two dark haired parents were shocked to see our daughters Snow White hair. As parents we knew it was strange that her hair was so light but we thought very little of what we thought was a...
