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…
The Fighting HARD Foundation Rare diseases are difficult to face for a myriad of reasons. They can be financially burdensome, physically painful, and emotionally draining. Further, they can make patients…
By Danielle Bradshaw from In The Cloud Copy There are not too many things that a mother won’t do for her child, and Alison Reynolds is the perfect example of…
To celebrate Rare Disease Day and raise awareness for approximately seven thousand rare diseases, Dr. Francis Collins, director of the National Institutes of Health, recently interviewed a person he…
According to a story from Yahoo News, Dr. Nancy Wexler spent around 20 years in Venezuela conducting pivotal research on a deadly rare genetic disorder: Huntington's disease. On Lake Maracaibo,…
Continued from Part 1 The surgery was over 12 hours long. I have two rods and 26 screws holding my spine and had nine ribs cut and reduced in…
I was born in 1974 in Buenos Aires, Argentina to Italian immigrants. I was born with a rare genetic disorder called Ehlers-Danlos syndrome kyphoscoliosis type, but it was not diagnosed…
Antonio Maltese is a young man living in Virginia. His family has also been devastated by the hereditary rare illness called Huntington's disease. In fact, he was diagnosed with the…
According to a story from The Charlotte Observer, Chris Younger was 18 when he first was diagnosed with X-linked hypophosphatemia, a rare disease that affects the bones. However, he had…
"When women come together to demand change, change happens." These are Dr. Svati Shah's words at the Miss America 2020 pageant. She encouraged the watching audience that although cardiovascular…
By Natalie Homan from In The Cloud Copy Mara Clawson is a visual artist who uses many different mediums to create art pieces that are full of color and life.…
By Rachel Whetstone from In The Cloud Copy Although people sometimes want to hide away when a disease leaves visible marks on their bodies, Academy Award winning actress Tatum O’Neal…
Gina Hollenbeck never considered that she could have lung cancer. She did not fall into any categories that would put her at a higher risk of cancer; she didn't smoke,…
As originally reported in the Cincinnati Children's, Brittney writes how she came into the world of rare diseases when her and her husband Michael decided to adopt a baby who…
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