Andy Trapp is a videographer who runs AB Trapp Productions, a small business documenting weddings and family occasions. He has been living with uncontrolled PKU since the age of 8.…
NBCNews Chief Foreign Correspondent, Richard Engel, opened up about one of the hardest phone calls he ever had to receive-- the call where he received the diagnosis of Rett syndrome for…
According to a story from Newswise, The University of Adelaide in Australia received a $1.19 million grant in order to spearhead an international research project. The project's aim is to…
There are fifty genetic diseases that can be characterized as lysosomal storage diseases (LSDs). Gaucher disease can be characterized as such. LSDs make up about one in every 8,000 births…
In a recent press release, the Patient Access Network (PAN) Foundation announced the opening of a new program that will help people living with hemophilia pay for the cost of…
The National Institute of Arthritis, Musculoskeletal, and Skin Diseases awarded 6.5 million dollars to a team of researchers last month. The grant funding goes towards the creation of a new…
On January 30th, pop singer Jordin Sparks' step-sister Bryanna Jackson-Frias lost her battle with sickle cell anemia, reported People. Complications surfaced that sent her to the ICU. Jordin posted to…
My name is Amy, and I’m a 37 year old single mom of two beautiful girls, ages 8 and 13. I work full time as a business analyst for a…
Chloe Fernandez is an 11-year-old with primary ciliary dyskinesia, and that hasn't stopped her from being an advocate for the disease, reports Los Angeles Times. When given several amazing opportunities…
A new effort to raise awareness and funding for rare disease is underway. SMA News Today reported that NORD, the National Organization For Rare Disorders, organized this campaign to challenge…
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