From left, Tonje, Morten, and baby Gulla. (Photo courtesy of Tonje Larsen) Day 6 of 31 This is Tonje Larsen’s (@rollin_with_tonye) story: Hi, my name is Tonje. I’m 23 years old and was born with spinal muscular atrophy (SMA) type 2. I live in Norway, and I’m…
Jose and his wife, Andrea. (Photo courtesy of Jose Flores) Day 5 of 31 This is Jose Flores’s (@joseinspires) story: A barrier is any obstacle that prevents movement or access. My name is Jose Flores, and I’m a 45-year-old from Florida, a global motivator, consultant, and No. 1…
Photo courtesy of Chessa Birrell Day 4 of 31 This is Chessa Birrell’s story: My name is Chessa Birrell. I am 26 years old and have SMA type 2. I live with my parents in Powder Springs, Georgia. I graduated from the University of Georgia with a degree…
Photo courtesy of Stéphanie Houvet Day 3 of 31 This is Stéphanie Houvet’s (@stefookie) story: My name is Stéphanie and I’m from France. My father is French and my mother comes from the Czech Republic; they met on holidays. I was born in the Czech Republic with…
Megan DeJarnett, left in wheelchair, with her husband, Jake, and her sons Bronx, left, and Shai. (Photo courtesy of Megan DeJarnett) Day 2 of 31 This is Megan DeJarnett’s (@megandejarnett) story: I remember being around 10 years old when I heard the doctor tell my parents that the…
(Photo courtesy of Shaniqua Granby) Day 1 of 31 This is Shaniqua Granby’s (@shaniqua__niqua) story: A few people have said to me, “You know, Shaniqua, it’s so cool that you are an attorney,” and while I do believe I accomplished a fantastic objective in my life, they may…
Healthcare providers involved in diagnosing and treating rare diseases believe that increased physician education and collaboration with specialized facilities will have the greatest positive impact on treating these conditions over the next five years, according to results from a 2021 survey. Definitive Healthcare, a healthcare commercial intelligence company, conducted…
Global Genes has partnered with the Rare Disease Diversity Coalition (RDDC) to advance health equity for rare disease patients and caregivers in underrepresented communities of color. “For rare disease patients, there are many challenges — and for people of color with a rare disease, these challenges are compounded…
The Rare Disease Diversity Coalition (RDDC) awarded $600,000 in grants to ease the disparities faced by rare disease patients of color. These Impact Rare Disease Solution grants will go five RDDC steering committee working groups, which aim to identify problems for rare disease communities and advocate for solutions. The five…
A crowdfunding campaign aims to raise $45,000 to support “Rare,” a documentary film featuring the struggles and achievements of people living with rare diseases and their families. Sweis Entertainment and Digital Cave Media launched the campaign — allowing filmmakers to finish producing and to release the documentary — on Kickstarter.
Get regular updates to your inbox.
