According to a story from Yahoo, the family of Wyatt Beiermann, a seven year old boy with lethal mitochondrial disease, is doing their best to savor the limited time that…
According to a story from express.co.uk, Elle Morris was only 11 years old when she died from a severe lung infection. Elle was born with cystic fibrosis, a serious genetic…
According to a story from jsonline.com, Tyler Trent, a Purdue University student who captured the hearts of thousands with his struggle against osteosarcoma, passed away at age 20 after his…
According to a story from the Edinburgh Evening News, Stephen Ritchie of Edinburgh, Scotland, has been an active participant in a progressive multiple sclerosis clinical trial since November of last…
There is a new show on television that showcases the experiences of patients and doctors at the Queen Elizabeth Hospital in Birmingham. On its first premiere, it showed the…
Tinashe is a ten year old boy from Zimbabwe. He is one of three sons whose family was recently interviewed by TechZim. The family was being interviewed about their…
There was a time when most children diagnosed with a rare condition did not live until adulthood. But now, with advances in medicine, many individuals are living long, full lives…
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The mesothelioma diagnosis was a surprise to Raya Bodnarchuk of Baltimore, Maryland because she had never worked in a factory, mine, the military, or a shipyard. These are the typical…
According to a story from the Daily Record, cystic fibrosis patient Kelli Gallacher found that she was able to stabilize her disease using the drug Symkevi. Now that her own…
According to a story from BBC, Louise Moorhouse gets the nutrition that she needs through two sources: pills and foul tasting nutrient shakes. This is because she was born with…
According to a story from Cystic Fibrosis News Today, Elizabeth Rogers, a cystic fibrosis patient, is just one of the many who have been disappointed by the lack of impact…
According to a story from Radio NZ, two grandmothers have taken a central role in getting a petition delivered to the parliament of New Zealand. This petition is calling for…
According to a story from Mirror Online, parents Gail and Matthew Rich were devastated when they heard the news that a critical treatment for Batten disease was rejected for coverage…
According to a story from kshb.com, Maureen Boesen was already prepared for the worst when she first took a DNA test in order to determine if she carried a BRCA…
Any fans of RuPaul Drag Race or the art of drag itself? Raise your manicured hand! Well, regardless of your answer - watch how the world of drag and rare…
When Julie Francisco was running on her 55th birthday, she could not ignore the pain in her lower abdomen and how “off" and slow her body felt. After a…
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A Rare Intervention For His Children’s Rare Disease An inspiring article has recently been published in the journal Nature that credits Nick Sireau, a resident of the UK, with…
According to a story from Parkinson's News Today, April is Parkinson's Disease Awareness Month. This year, special focus will be given to patients with the rare, early onset form of…
Robyn Smyth is a 14-year-old girl from Ireland who was diagnosed with neuroblastoma when she was three. Since then she's undergone countless rounds of chemotherapy, investigational treatments, a treasured period…
According to a story from nbcrightnow.com, pulmonary fibrosis affects hundreds of thousands of people in the US. However, many people still have not heard of the disease and are not…
According to a story from Gaucher Disease News, life for 24 year old Madeline Collin, who has Gaucher disease, has never been easy. However, being subject to bullying and a…
According to a story from the Clarion Ledger, Keith Bradshaw of Bolton, Mississippi was on his way to celebrate New Years Eve in 2015 when he was suddenly struck by…
A young girl in Mauritius, an island in the Indian Ocean, has recently been given a second chance at a normal life after receiving a rare disease diagnosis and…
According to a story from the Inter Press Service, the First Latin American and Caribbean Assembly of Organisations of People Affected by Hansen's Disease has just recently concluded. Hansen's disease,…
According to a story from ctvnews.ca, a recent treatment with gene therapy appears to have changed the life of thirty year old Josh McQuillin, who has a urea cycle disorder,…
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