Opinion: California’s Rare Disease Council Will Transform Care for People with ALS
California’s recent decision to create a Rare Disease Advisory Council is a milestone that brings new hope to people living ...
The Atlantic8mon
What Is It Like to Live With a Rare Disease?
A specialist identified the bruises as erythema nodosum—not a disease per se ... Because it’s so rare for a child with trisomy 18 to survive this long, he is in effect pioneering best ...
STAT10d
My son’s rare disease was renamed ASMD. Why are people still calling it Niemann-Pick?
Eponyms — diseases named after a person — can cause serious confusion. That is particularly true in one rare disease ...
Nature4y
Fast-tracking rare disease diagnosis and treatment
if not days. One of the reasons rare diseases take a long time to diagnose using standard tests is that there are roughly 7,000 rare diseases on record. “Because these diseases are so rare ...
pharmaphorum1d
Rare disease insight: interview with Timothy Coté
The KGI position proved better suited to half-time employment, so while I still work a great ... required to assure that patients with rare diseases are not locked out of the process of getting ...
Minnesota Daily3d
Parents of children with rare diseases share their stories for Rare Disease Day
The University of Minnesota’s annual Rare Disease Day seminar this year ... “Our restorations are not often covered by medical insurance plans, so we end up getting bills for like $100,000 in order to ...
My daughter has a rare disease. We shouldn't have had to leave the US to save her life.
She was not yet 2 years old.A few months later ... and because the patient pool for such a rare disease is so small. As a ...
Medscape9y
The National Organization of Rare Disorders
This collaboration between The National Organization for Rare Disorders ... screening is so important in the early diagnosis and treatment of rare disorders. Rare Diseases -- Not Just for ...
pharmaphorum1mon
Horses or zebras: inspiring behavioural change to make the rare recognised
Thus, together, these diseases are, in some ways, not so rare. Many appear at birth or in childhood and can be fatal unless diagnosed and treated. Patients face the challenge of a diagnosis ...
ABP Live on MSN6d
This Rare Disease Catches Infants Within First 6 Months, Could Go Unnoticed Until It’s Too Late
By Dr. Kaushik Mandal Rare diseases very often remain in the shadows, as common people have limited awareness about them.
Calvin College5y
Team Members
so rare disease research is not only important to understand these diseases and find treatments for those affected, but also to help the scientific research community further understand the human ...
Science Daily29d
Zebrafish as a model for studying rare genetic disease
He further explains, "Unlike cancer or diabetes, rare diseases like NS are not priority research objectives among pharmaceutical companies, and the small groups of patients suffering from them are ...