Rare Disease in the News

Livemint

Drugs For Rare Diseases Have Become Uncommonly Rich Monopolies
NPR
More than 30 years ago, Congress overwhelmingly passed a landmark health bill aimed at motivating pharmaceutical companies to develop new drugs for people whose rare diseases had been ignored. By the drugmakers' calculations, the markets for such ...
Rare diseases; orphan drugsLivemint
Drugmakers Manipulate Orphan Drug Rules To Create Prized MonopoliesKaiser Health News
High Prices For Orphan Drugs Strain Families And InsurersJefferson Public Radio

all 10 news articles »

Fox News

4-year-old who was deemed 'lazy' finds hope in new drug that treats rare disease
Fox News
A new drug is offering hope for the family of a little girl whose genetic defect causes mobility issues similar to that of polio and amyotrophic lateral sclerosis (ALS). Four-year-old Lexi Pacini, of Colorado Springs, was diagnosed with type 2 spinal ...


MobiHealthNews

Penn Medicine explores ResearchKit's potential for studying rare ...
MobiHealthNews
In a first for the University of Pennsylvania Health System, Penn Medicine launched a new ResearchKit app today aimed at people with a rare condition called ...

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Fox News

Toddler with rare disease inspires dad during marathon | Fox News
Fox News
A 3-year-old North Dakota boy is just one of 40 children worldwide with a rare, muscle-wasting disease, but it didn't stop him from participating in a half marathon ...
Rock 'n' roll participant with rare disease finds hope in running | KSAZFOX 10 News Phoenix

all 3 news articles »

Medical Marketing and Media

Trump administration raises questions for rare-disease drugmakers ...
Medical Marketing and Media
Nobody knows what the future holds for the Affordable Care Act under the Trump administration and an emboldened Republican Congress. But in advance of ...

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Saddle Brook-Elmwood Park Daily Voice

Teen With Rare Disease Inspires Elmwood Park To Run For ...
Saddle Brook-Elmwood Park Daily Voice
Dee Dee Ingui, 16 of Elmwood Park, has Peutz-Jeghers Syndrome, a rare genetic disease. She is the inspiration behind the non-profit, Rare is Beautiful.

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Rare Disease Information Websites Vary in Quality, Study Finds
AJMC.com Managed Markets Network
The study, published in the Journal of Medical Internet Research, evaluated the quality of 693 German websites containing information about rare diseases. These sites were also grouped by publisher type to assess the relative quality levels of sites ...


MedCity News

Oncology, rare diseases and too little genomic diversity: 3 themes from #JPM17
MedCity News
As always, the J.P. Morgan Healthcare Conference played host to wider debates about the health and direction of the life sciences in 2017. Drug pricing was part of the discussion (Trump made his splash mid-week). Gender diversity came to the fore in ...


Washington Post

A rare disease gave him tree branch-like hands. After 16 surgeries, he can finally see his fingers.
Washington Post
Doctors diagnosed the man with epidermodysplasia verruciformis, a rare genetic disease that makes people especially susceptible to human papillomavirus and developing skin tumors. According to AFP, Bajandar was only one of four people in the world to ...
'Tree Man' Has Surgery: What Causes This Rare Condition?Live Science
'Tree Man' Becomes First Person Cured Of Epidermodysplasia Verruciformis, Rare Genetic Disease That Causes ...Medical Daily
Tree Man Cured: Rare Case of Epidermodysplasia VerruciformisRare Disease Report
Health Aim
all 31 news articles »

NOVA Next

The Rare Disease That's Helping Researchers Cure Ebola — NOVA ...
NOVA Next
For more than two years, Ebola stalked West Africa, sickening nearly 30,000 people and killing almost 12,00 more. In each person Ebola infected, the virus ...

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