Latest News

Sunday, April 22, 2018
This RSS feed URL is deprecated, please update. New URLs can be found in the footers at https://news.google.com/news
Sunday, April 22, 2018

Interesting Engineering

Researchers Finally Solved the Mystery Behind Rare Bone Disease
Interesting Engineering
Melorheostosis is one of the most notorious diseases as the reason for its occurrence was a mystery. This condition is also known as the “dripping candle wax” bone disease. It affects human bones and causes the excess formation of bone tissue. The ...

Sunday, April 22, 2018

The Siasat Daily

ORDI appeals to state governments to implement rare disease policy
The Siasat Daily
“Recently, the central government finalised the National Policy for Treatment of Rare Diseases and has allocated Rs 100 Crores corpus for the treatment of rare disease patients. Taking guidelines from the national policy, the state governments should ...

Saturday, April 21, 2018

Pensacola News Journal

Pensacola teen living with rare disease sings like an angel
Pensacola News Journal
It was a tough Sunday a week ago. I was coming off a bad week and stopped at Bayview Park late in the day to pick blackberries and catch my breath before launching myself into another Monday in a few hours. But before I made it down near the water ...

Saturday, April 21, 2018

TheHealthSite

ORDI appeals to state governments to implement rare disease policy
TheHealthSite
Organisation for Rare Disease India (ORDI), a non-profit patient association focuses on improving the health of patients with rare diseases.
Why Pushing The Boundaries Of Innovation Is The Only Medicine To Tackle Rare DiseasesBW Businessworld

all 2 news articles »
Saturday, April 21, 2018

ANI News

ORDI appeals to state governments to implement rare disease policy
ANI News
"Recently, the central government finalised the National Policy for Treatment of Rare Diseases and has allocated Rs 100 Crores corpus for the treatment of rare disease patients. Taking guidelines from the national policy, the state governments should ...

and more »
Saturday, April 21, 2018

telegraphherald.com

TRI-STATE
telegraphherald.com
Copyright, Telegraph Herald. This story cannot be published, broadcast, rewritten or redistributed without prior authorization from the TH. Facebook · Twitter · Email; Print; Save · Fundraiser event page. 15 hrs ago; (0). if you go. WHAT: A fundraiser ...

Friday, April 20, 2018

MedPage Today

AAN 2018: Rare Disease Breakthroughs and Novel Approaches
MedPage Today
Another rare disease treatment breakthrough will be featured in Tuesday's clinical trials plenary session. David Adams, MD, PhD, of the French National Reference Center for Familial Amyloid Polyneuropathies, will show data from the phase III APOLLO ...

Friday, April 20, 2018

CSL Behring, Leader in Rare Diseases, Showcases Innovations in Neuromuscular Medicine (NMM) at the 2018 ...
PR Newswire (press release)
"CSL Behring has a long history in delivering on its promise to develop immunoglobulin replacement therapies that treat rare conditions related to the immune system and we are committed to bringing those treatments to neurologists," said Debra Bensen ...

and more »
Friday, April 20, 2018

Genetic Literacy Project

Gene therapy and rare diseases: 'Is curing patients a sustainable business model?'
Genetic Literacy Project
We just saw GlaxoSmithKline sell off its pipeline of gene therapies for rare disease to a London startup called Orchard Therapeutics for a 20 percent stake in the young company. The treatments Glaxo didn't want were bona fide miracles: one-and-done ...