At one point in his journey with cystic fibrosis, Marc Cotterill experienced a rapid loss in lung function. In fact, it dropped to just 29%. As his health worsened,…
According to a story from thv11.com, Susan Head of Little Rock, Arkansas is a marine veteran who now faces a new battle: Castleman disease. In the midst of the ongoing…
"I thought it was a hernia." When George Benson experienced lower abdominal pain in 2009, at age 51, he wasn't concerned. He was a truck driver, artist, and family…
If you've been overwhelmed by the news and are looking for a feel-good story, you've come to the right place! Five years ago, when they were just 5 years…
The Rare Diseases Clinical Research Network (RDCRN) has recently launched a survey aiming to assess the impact of COVID-19 on the rare disease patient community. This initiative is important as…
Earlier this year, The Leukemia & Lymphoma Society hosted a presentation by Dr. Eunice Wang, Clinical Leukemia Service, Professor of Oncology, Roswell Park Comprehensive Cancer Center. Dr. Wang’s presentation…
If you're like me, your life has changed immensely over the past few months. COVID-19, a novel coronavirus with 8.39 million diagnoses worldwide, has kept us inside and changed…
June 23rd, 2020 will be recognized as Dravet Syndrome Awareness Day, and June is Dravet Syndrome Awareness Month. These events are dedicated to spreading awareness about the disorder among the…
By Jodee Redmond, In the Cloud Copy The work of a pediatric oncologist isn’t for the faint of heart. All their patients are children, and the outcome isn’t always good.…
In the United States of Care, Catherine Jacobson tells her story of being born in South Korea with OCA1A albinism which caused her to be legally blind, being adopted by…
In the geographically small island nation of New Zealand, there are estimated to be as many as 300,000 people who live with various rare diseases or disorders. Unfortunately, like in…
As reported in Globe News Wire, amidst a difficult time for rare disease patients as the medical world’s refocuses on the coronavirus, a new scholarship has been announced that could…
By Danielle Bradshaw from In The Cloud Copy Cheri Tannenbaum spends her days making 1960s flower child themed clothing and it’s a style that she’s rather fond of wearing too.…
According to a story from Scleroderma News, June is recognized as Scleroderma Awareness Month. While physical distancing as a result of the ongoing coronavirus/COVID-19 pandemic may keep some folks at…
Arabel Standingbear sketches figures with lead pencils and paints realistic scenes with acrylics. Her poem was accepted by a museum. She has won in local art contests between schools, and…
Growing up, my family and I faithfully watched Survivor each week. Although my parents stopped watching a few years back, settling in every Wednesday during the season is somewhat of a…
According to Disability Horizons, an extremely talented filmmaker with muscular dystrophy recently won an Award of Recognition from The Best Shorts Film Competition. Stephanie Castelete-Tyrrell's film, entitled Muscle Warriors, documents…
In a time of instability, health crises, and stigma, screenwriter Christian Hadjipateras advocates for a positive change. With nearly 5.69 million diagnosed cases of COVID-19, Christian notes that there…
What would motivate a man, who has been living with amyotrophic lateral sclerosis (ALS) for twenty years, to accept an invitation to become part of a five-man team and…
Kelly and Rory McElligott, of Highton, Victoria, Australia, have 3 beautiful children: Maggie, Billy, and Alice. But the family was shocked when two of their children, Maggie and Billy,…
Jalee Pelissier lives with muscular dystrophy. When she was just 13 she became an advocate for others with disorders or disabilities like her own. Now 20, her advocacy has only…
By Natalie Homan from In The Cloud Copy At 41, Tiffany Wedekind, of Columbus, Ohio, has lived much longer than her doctors could have hoped when she was diagnosed with…
For Emma, the worst part of receiving her diagnosis with ankylosing spondylitis wasn't adapting to the constant pain, losing her breath over five minutes of standing, being too exhausted to…
Mobile County Mobile County has unfortunately become one of the hotspots for COVID-19 in Alabama. But individuals and organizations are working tirelessly to help their community. Individuals Catherine Drake has…
As reported in Vox, Amber Freed set into to motion when she learned her son Maxwell's genetic disorder made him just the 34th in the world to be diagnosed with…
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