By Danielle Bradshaw from In The Cloud Copy Sean and Josie Kelly, a New York native couple, have had a newborn son named Sawyer who was born with a rare…
By Caitlin Seida from In The Cloud Copy If you've never heard of CDG, or congenital disorders of glycosylation, you're not alone. The rare family of diseases, all inheritable, are…
According to a story from The Charlotte Weekly, local resident Kevin Tobin recently ran 400 laps around his house---the equivalent of a marathon---to help raise money for Dan Donoher, a…
George and Josie Taylor fell in love in their 20s. 52 years later and happily married, the couple believed that they could conquer anything together. But COVID-19 threw a…
On Wednesday April 22nd, 2020, the World Orphan Drug Congress held a one hour webinar that was focused on how the rare disease community could respond to the ongoing coronavirus/COVID-19…
For Mallory Holloway, precautions to avoid lung infections have been a part of her daily life for a long time. This is because she lives with cystic fibrosis, a rare…
According to a story from Yahoo News, there's no denying that the coronavirus/COVID-19 pandemic is an unprecedented experience for millions of people around the world. However, it can be especially…
With COVID-19 spreading across the country, many people are now thinking of how to keep their friends, their families, and themselves safe from the virus. But for those whose…
According to a story from koco.com, the community of Ada, Oklahoma, recently held a birthday celebration for a local affected by Alexander disease. Hunter Goodwin recently turned 18 years old,…
Uncertain times may be the understatement of the year so far. When the news of COVID-19 (coronavirus) caught our attention, there were a lot of people frozen in disbelief and…
According to a story from Spectrum News, the Andrews family has been dealing with a rare disease called Niemann-Pick disease type C for years. Parents Pam and Chris knew early…
According to a story from Wexford People, 8-year-old Mia-Lily Ruttle wants to spread some hope to people around the globe. The girl, who has neurofibromatosis, was upset by the impact…
Michael and Armené Kapamajian were at home in Los Angeles settling in with their one week old baby, Sasoun, when their doctor called and asked them to come in…
April 17th, 2020 is World Hemophilia Day. This event is held to help foster awareness about hemophilia and other related bleeding disorders. It is a day when this rare community…
April 22nd, 2020 heralds the beginning of World Primary Immunodeficiency (PI) Week. This will be the ten year anniversary of the event, which is designed to spread awareness about PI…
April 15th, 2020 will be the 7th annual International Pompe Day, a day of recognition and fostering awareness around Pompe disease organized by the International Pompe Association. Like many rare…
According to a story from Mirror Online, Vera Twomey from Cork, Ireland, was devastated when her four month old daughter had a severe seizure that lasted 45 minutes. Before long,…
According to a story from pharmaphorum.com, Jim Kuhn had a successful career in business for over 30 years, but everything changed a decade ago when he was first diagnosed with…
"A steak saved my life," writes columnist Damon Young, 41, in his article for GQ, as he shares the story of his diagnosis with Takayasu's arteritis. After over-indulging at dinner,…
When Kyle and Sue Dempsey's daughter Mackenzie was three years old, she was in a car accident that resulted in head trauma. A couple of years later, when she was…
According to a story from stuff.co.nz, a two year old boy named Rhys from Auckland, NZ has spent much of his young life in the hospital. This is because he…
Molly Ouimet was three years old when she got her first kidney stone. Molly, who wasn't very vocal at the time, had a difficult time explaining the pain that she…
By Jodee Redmond from In The Cloud Copy Frankie Hewitson spent more than her fair share of time in the hospital during her childhood. The 27-year-old was diagnosed with three…
By Danielle Bradshaw from In The Cloud Copy Bill Bradford has made helping others a lifelong habit, but now this veteran and former paramedic needs the help of others to…
As originally reported in Discover Magazine, Huda Zoghbi took an unexpected route to winning the Breakthrough Prize in Life Sciences in 2017 for her discoveries of the genes responsible for…
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