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…
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…
Photo courtesy of Ali Ramos Day 8 of 31 This is Ali Ramos’ (@kittylegs) story: I started my career as a graphic designer, one who liked not having to interact with others unless it was about art. I felt intimidated to go back to school and dive into…
Photo courtesy of Samantha Przybylski Day 7 of 31 This is Scarlett Przybylski’s story: Hi, my name is Scarlett! I just turned 4. Next year I will turn 5! I had a Pokémon birthday, and Pikachu is my favorite! I have a mama and a papa. My papa’s name…
Photo courtesy of John Jones II Day 6 of 31 This is John Jones II’s story: I was diagnosed with SMA at a very young age, making it a part of my life since before my recollection. That is a blessing really, to not have to navigate life that…
Photo courtesy of Sarah Cheung Day 5 of 31 This is Sarah Cheung’s (@sarahpcheung) story: From a young age, I wanted to help others. I was crushed when I realized I could not become a nurse due to my physical limitations (I have SMA type 1). Given my…
Photo courtesy of Chaz Hayden Day 4 of 31 This is Chaz Hayden’s (@thechazhayden) story: Hey, friends! My name is Chaz, I’m 25 years old, and I have SMA type 1. I’m a soon-to-be-published author with my debut novel, The First Thing About You, releasing in fall…
Photo courtesy of Ainaa Farhanah Amali Day 3 of 31 This is Ainaa Farhanah Amali’s (@ainaafrhanah) story: “Sweet, sour, salty, mixed” — that’s how I describe Year 2 of the COVID-19 pandemic, which of course has not ended yet. Last year, when the first cases were announced, many…
