Bionews Staff,  writers and editors—

Registration is now open for Global Genes‘ 2021 RARE Patient Advocacy Summit. This year’s hybrid event will be livestreamed from California Sept. 27-29, and some seats also are available for attending the event in person in San Diego. “Here you’ll have the opportunity to connect and engage with others…

Photo courtesy of Hanna Eide Day 16 of 31 This is Hanna Eide’s story: My name is Hanna, and I’m a digital artist. I use Adobe Photoshop to do my artwork, using images from the internet that are labeled for reuse and modification. I sell my artwork through my…

Photo courtesy of Jacob Frost Day 15 of 31 This is Jacob Frost’s story: I have SMA type 3. I started using a wheelchair in elementary school. Thanks to supportive family and parents, I never believed my disease controlled my life or limited my potential. I dreamed of…

Photo courtesy of Joe Frost Day 14 of 31 This is Joe Frost’s story: Life with a disability is much akin to playing a game on insane mode, due to the lack of access to resources, services, and sites. Yet, for all the challenges, there are a few benefits.

Photo courtesy of Pia Noi Schmid Day 13 of 31 This is Pia Noi Schmid’s (@pianschmid) story: I’m Pia Noi Schmid. “Noi” is my middle name — it means “little” in Thai. Cute, isn’t it? When I was 2 years old, I was diagnosed with SMA type 2.

Photo courtesy of Tristram Peters Day 12 of 31 This is Tristram Peters’ (@tristrampeters) story: When I was younger, I tried to hide my disability. I’d push myself to do everything my peers did, to show my disability didn’t matter. I’d even choose not to wear my tray/table…

Registration is now open for the 2021 Rare Diseases and Orphan Products Breakthrough Summit, which will be held virtually Oct. 18–19. The event, also known as the National Organization for Rare Disorders (NORD) Summit, brings the rare disease community together to network and discuss developments in treatments and research into…

Photo courtesy of Beth Whitby Day 11 of 31 This is Beth Whitby’s (@rolling_in_vintage) story: My name is Beth Whitby, I am 35 years old, and I have SMA type 2. I live in the U.K. with my husband and daughter. I have always believed and been taught…

Photo courtesy of Carolyn Saylor Day 10 of 31 This is Carolyn Saylor’s story: We live in a rural area in central Wisconsin, and when our daughter was diagnosed with SMA type 2 in 1991, the local specialists felt we’d be “lucky” if Britt lived to…

Photo courtesy of Tandin Dorji Day 9 of 31 This is Tandin Dorji’s story: I moved to the United States as a teenager with hopes of getting my disability cured in 2007. Since I was misdiagnosed with polio back in my native country, Bhutan, I was sure that I…