Latest News

Wednesday, May 04, 2016

Finding treatments for rare diseases: an interview with Dr Richard Thompson
News-Medical.net
It is estimated that around 400 rare diseases have licenced treatments, and a large proportion of these are a consequence of orphan drug legislation, which has helped to incentivise the production of drugs for small patient populations. However, there ...

Wednesday, May 04, 2016

HSE finds rare disease isn't linked to town's industry
The Times (subscription)
There is no link between a suspected cluster of a rare condition of the peripheral nervous system in Duleek, Co Meath and the three industrial plants in the town, an HSE report has found. It followed the identification of three people living in Duleek ...

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Wednesday, May 04, 2016

Israeli pharma company provides rare disease drug for free after it can't find patients
BioPharma Dive
Israel-based Taro Pharmaceuticals will distribute its rare disease drug Keveyis free of charge, after negligible sales and difficulty identifying patients. Taro will continue to manufacture the drug, but all commercial sales and marketing will be ...

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Wednesday, May 04, 2016

Geo News, Pakistan

Rare disease makes two children from Quetta hang on to the sun for life
Geo News, Pakistan
The two children who live in a suburb at Quetta city suffer from a rare disease. When the sun rises they are bright and chirpy, when it sets they become lifeless. “I have five children. But only these two suffer from this disease,” said Hashim, their ...

Tuesday, May 03, 2016
Tuesday, May 03, 2016

Huffington Post

Finding Common Grief After My Mother's Rare Disease
Huffington Post
I've been hiding a secret from my new friends for years. And by new friends, I mean the people I've met in New York City since 2010. On the small Caribbean island where I was raised, it's impossible to hide anything, much less your family life. Truths ...

Tuesday, May 03, 2016

The Nordic Page

We Have a Rare Disease: We Are Losing Intuition
The Nordic Page
“It's a mental disease”, states one of the characters in the play, the mother, “when you are loosing your intuition and becoming too rational”. The improvised play Proud Cloud is very much about that. It is a journey for the lost intuition, a journey ...

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Tuesday, May 03, 2016

The Nordic Page

We Have a Rare Disease: We Are Loosing Intuition
The Nordic Page
“It's a mental disease”, states one of the characters in the play, the mother, “when you are loosing your intuition and becoming too rational”. The improvised play Proud Cloud is very much about that. It is a journey for the lost intuition, a journey ...

and more »
Tuesday, May 03, 2016

Health Aim

Rare Disease Prevents Siblings From Sleeping Ever Again And Eventually Die
Health Aim
Lachlan and Hayley came to know about their this rare disease when their grandmother became ill because of the genetic disorder. The sibling were teenagers then. According to The Independent, Lachlan and Hayley's mother died from the same disorder at ...
Meet the siblings who never sleep thanks to rare genetic brain disease Fatal Familial InsomniaThe Sun
Brother and sister will never sleep again due to rare insomnia disease which will eventually kill themMirror.co.uk
Australian siblings inherit rare insomnia that killed two generations in familyInternational Business Times UK
Daily Mail -Huffington Post UK
all 22 news articles »
Tuesday, May 03, 2016

yourcentralvalley.com

Fresno Boy Smiling Despite Rare Disease
yourcentralvalley.com
The ten-year-old doesn't just have the cars, he has entire real-life rosters-- with backups. But Donovan is special in more ways than one. He has a rare connective tissue disease-- so rare that there are only 50 confirmed cases in the entire world ...
Boy dances through pain of rare genetic diseaseFort Worth Star Telegram

all 2 news articles »