Latest News

Friday, November 28, 2014

The River Cities Sunday Tribune

Marble Falls boy shares rare disease, strong will with Dallas Cowboy
The River Cities Sunday Tribune
Six-year-old Joel Thompson (center) of Marble Falls got to meet Dallas Cowboys defensive tackle Amobi Okoye (back row, left) on Nov. 15. The boy suffers from the same rare disease, anti-NMDA receptor antibody encephalitis, as the pro player. Also ...

Thursday, November 27, 2014

Good4Utah

Centerville teen a rehab success after paralysis from rare disease
Good4Utah
A Centerville, Utah family sends its son on an LDS mission to England. He returns home about a month later in a wheelchair. In our continued partnership with Intermountain Medical Center, we show you the progress the 18-year-old is now making. Thanks ...

Wednesday, November 26, 2014

Times-Mail (subscription)

Everybody's Talkin' Ryan battling rare disease
Times-Mail (subscription)
Most of the community is probably aware that Mark Ryan, a teacher at the North Lawrence Career Center and former Bedford North Lawrence boys basketball coach, is being treated for a rare disease at the University of Pittsburgh Medical Center.

Wednesday, November 26, 2014

OurWindsor.ca

Man with rare disease petitions MPP for access to drug
OurWindsor.ca
BRAMPTON – A Brampton man suffering from an ultra-rare disease is petitioning the province for access to a drug that could save his life. Michael Eygenraam, the local father of two, suffers from an extremely rare genetic condition called atypical ...

and more »
Wednesday, November 26, 2014

InsideHalton.com

Man with rare disease petitions MPP for access to drug
InsideHalton.com
BRAMPTON – A Brampton man suffering from an ultra-rare disease is petitioning the province for access to a drug that could save his life. Michael Eygenraam, the local father of two, suffers from an extremely rare genetic condition called atypical ...

and more »
Wednesday, November 26, 2014

OPEN Act introduced in USA to repurpose drugs for rare diseases
The Pharma Letter
Last week, US Representatives Gus Bilirakis (Republican, Florida) and G K Butterfield (Democrat, North Carolina) took a bipartisan step on behalf of patients with rare diseases by introducing the Orphan Product Extensions Now Accelerating Cures and ...

Wednesday, November 26, 2014

Brampton Guardian

Man with rare disease petitions MPP for access to drug
Brampton Guardian
BRAMPTON – A Brampton man suffering from an ultra-rare disease is petitioning the province for access to a drug that could save his life. Michael Eygenraam, the local father of two, suffers from an extremely rare genetic condition called atypical ...

and more »
Wednesday, November 26, 2014

Mississauga

Man with rare disease petitions MPP for access to...
Mississauga
BRAMPTON – A Brampton man suffering from an ultra-rare disease is petitioning the province for access to a drug that could save his life. Michael Eygenraam, the local father of two, suffers from an extremely rare genetic condition called atypical ...

Wednesday, November 26, 2014

Boston Herald

Nanny's lawyers want rare disease inquiries
Boston Herald
The case of the Irish nanny charged with murdering a 1-year-old Cambridge tot took a bizarre twist in Middlesex Superior Court yesterday as prosecutors said a medical expert had ruled out a rare disease — and defense attorneys said they want to know ...

Tuesday, November 25, 2014

Targeting Drugs for Rare Diseases
Medscape
Marshall L. Summar, MD: I'm Marshall Summar, chief of genetics and metabolism at Children's National Medical Center in Washington, DC. I am here for Medscape Rare Diseases at the National Organization of Rare Diseases Orphan Products Breakthrough ...