Lori Dunham’s recent article for the Lambert-Eaton News is a message to parents that no matter what disease their children may have, teaching them to advocate for themselves is…
In an earlier article, I've spoken about the power of Google and how it can benefit both patients and medical providers. Through the power of the internet, advocates can help…
Lindy Thrackston, a FOX59 news anchor in Indianapolis and emcee for the Indiana Pacers, interviewed recently with ON TODAY. She says that her cancer was caught in time but…
Cystic fibrosis patients around the world are fighting to gain access to a range of drugs known as CFTR modulator therapies that could have a hugely beneficial impact on their…
As reported in the Northhampton Chronicle;, sometimes it's our toughest challenges that inspire us to grow taller than we thought possible and to push past our notions of our limits.…
According to a story from ANCA Vasculitis News, the month of May is recognized as Vasculitis Awareness Month, a time for spreading awareness about vasculitis among the general public and…
According to a recent article in USA Today, the decades-old vision of gene therapy has become a reality for a Danish couple. Thomas Felborg, his wife Daria Rokina brought…
This is part 2 of this story, click here to read part 1! Michelle had taken her daughter to see a geneticist who promptly diagnosed her with achondroplasia. He ordered…
Julie Anding can recall the exact moment of onset of her mal de debarquement (MdDS) symptoms. It was December 27th of 2017. She was in Utah on vacation for Christmas.…
At birth, Don Smith was diagnosed with hemophilia A, a bleeding disorder. At that time, treatment options for the illness were limited. Most patients were not expected to live much…
When is hearing loss a good thing to discover in a child? It sounds like the beginning of a “dad joke.” The answer and consequences are real, and in the…
Written by Anis Mohd Nor I first became a mother in 2017. The pregnancy was a bumpy one - while I felt blessed to be pregnant after several years of…
The month of May is recognized annually as CF (Cystic Fibrosis) Awareness Month, a time meant to help spread awareness about the genetic disorder among the medical community and the…
According to a story from MSN, 73 year old Ronnie Wood of the Rolling Stones recently discussed in an interview his struggle with small cell lung cancer during the COVID-19…
The month of May is being recognized as Lyme Disease Awareness Month, a time to spread awareness about this disease among the medical field and the general public. As spring…
No one can truly prepare for life raising a child who has a rare disease. But as exhausting as it can be, Lori Dunham describes that raising her little girl…
In this digital age, rare disease issues have become more prevalent and more visible. According to Eurordis, a rare disease affects less than 1 in 2000 people. There are more…
Not everyone in the little people community is advocating for the controversial drug that’s promising to increase the growth of people with achondroplasia, the most common type of dwarfism. The…
My name is Adam Nelson. I am 33 years old and I was born with a rare genetic connective tissue disorder known as epidermolysis bullosa simplex (EBS) of the Weber-Cockayne…
Ryan Alam was diagnosed with mitochondrial-membrane protein-associated neurodegeneration (MPAN), a rare form of neurodegeneration with brain iron accumulation (NBIA), but he hasn't let these conditions slow him down. He has just…
Nash Hensley is six years old, but in his short life he's already faced many challenges. He was diagnosed at birth with not one, but two rare diseases. First, Nash…
According to a story from dailymail.co.uk, 59 year old Marcia Ferguson-Roa recently died only a few weeks after unusual symptoms, such as fatigue and ulcers on her head, began to…
The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is gearing up to recognize International FOP Awareness Day this year on April 23, 2021. The event is meant to help spread awareness…
In a previous article, I talked about the importance of patient-led advocacy groups and how they can positively impact how a rare diagnosis is received and understood by patients. Do…
In a recent interview with CNN, Dan Schoenthal, a retired 56-year-old police officer of Great Valley, New York, explained that in 2015 he received a diagnosis of Parkinson’s disease.…
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