According to a story from 10tv.com, Kellan Shatto is an eight year old boy who really likes to play with Legos. He also has a rare disease: neurofibromatosis. The disease…
As originally reported in Mirror, when Sian Hopper was in secondary school, she began to get headaches. She attributed them to stress: she had been studying for her GCSE exams,…
According to a story from Soweto Urban, mother Lebohang Leuta is no stranger to the challenges that come with raising and taking care of a child with a chronic rare…
According to a story from wearegreenbay.com, a team of scientists associated with the University of Wisconsin, Madison are undertaking a project that will help improve the effectiveness of research related…
According to a story from BioPortfolio, the biopharmaceutical company SpringWorks Therapeutics, Inc., has recently announced that the European Commission has given the company's investigational drug candidate mirdametinib Orphan Drug designation.…
According to a story from The Columbian, twins Jill Noe and Whitney Bliesner had developed a deep bond during their childhood days growing up in Oregon. However, they did not…
According to a story from The Washington Post, Enrique Galvan has been subjected to relentless bullying and rejection ever since he first started school. The reason why? He was diagnosed…
According to a story from KTVZ, Jill Noe and Whitney Bliesner have always shared a special bond. They are twins, now 34 years old. Despite their closeness, they do share…
A three-year research grant of $11 million has been awarded through the Gilbert Family Foundation in America. According to a recent article in News-Medical Life Sciences, the Foundation was formed…
A new medication called selumetinib has just received Breakthrough Therapy designation by the FDA for pediatric patients diagnosed with neurofibromatosis type 1 (NF1) or inoperable pleciform neurofibromas. This therapy has…
The Atlantic featured this incredible story about the possibilities of using genetically altered piglets as avatars for children with genetic diseases. Furthermore, the article delves into the personal story of one…
According to a story from EurekAlert!, a collaboration of Sage Bionetworks, The Children's Tumor Foundation (CTF), and the Neurofibromatosis Therapeutic Acceleration Program (NTAP) have announced the initiation of the very…
If you haven't heard of neurofibromatosis (NF), you’re in surprisingly good company. For most of her life, Rachel Mindrup, an artist, illustrator, and Resident Assistant Professor at Creighton University, who…
Neurofibromatosis is an extremely rare condition. Worldwide it affects just one in four thousand people. Gail Appelgren and Tim Golumbia are two of the individuals living with the illness and…
The Joint Global Neurofibromatosis Conference: Combining the 2018 Children's Tumor Foundation NF Conference, the 18th European Neurofibromatosis Meeting, and 2018 Schwannomatosis & NF2 State of the Art This event…
The healthcare technology company RDMD was founded by Onno Faber, who has himself been diagnosed with a rare disorder. RDMD, which describes itself as “dedicated to accelerating research” with…
The Live Like Bella Childhood Cancer Foundation was created for Bella Rodriguez-Torres. The Miami born girl had stage four of a rare childhood cancer which took her life at the…
According to a story from Newswise, neurosurgeons at UC San Diego Health can now provide patients with an auditory brainstem implant (ABI) that can preserve some degree of hearing in…
A man in France has been the first person to ever receive two face transplants, reports the BBC. After Jérôme Hamon’s first transplant was rejected he underwent a second transplant…
According to a story from Medical Xpress, the addition of crizotinib with radiation therapy could help reduce hearing loss associated with the treatment in patients with neurofibromatosis II. Crizotinib is…
According to a story from Business Wire, selumetinib, a drug in development for the treatment for neurofibromatosis type 1, was recently granted Orphan Drug Designation by the Food and Drug…
Although it never should have happened, at least the right course of action was taken! Reggie Bibbs of Houston, Texas was turned away from his Uber driver when he requested…
When she was only 16 months, Poppy was diagnosed with neurofibromatosis (NF). After 60 intense rounds of chemotherapy, she has now lost sight in one eye. NF is a rare…
Michele Holbrook is a runner-- if you spotted her jogging on the street, you wouldn't believe that her body was plagued by more than 20 tumors due to a rare…
Sandra De Santos has thousands of bubble-like tumors on her body due to a rare disease called neurofibromatosis type-1. It's a hard life, but she has spoken out proudly about…
© Copyright 2024 Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
