Latest News

Wednesday, July 27, 2016

Washington Post

These families who share a rare disease just gathered for an international reunion. It may speed along a cure.
Washington Post
Every year for three days in July, people from all over the U.S. and in Europe who are affected by the rare disease travel to a 20-acre horse ranch in LaPorte County, about 90 minutes southeast of Chicago. Like any excursion at the height of summer ...

Tuesday, July 26, 2016

NBC Chicago

Boy, 2, With Rare Disease Saved By 'Life Saving' Bone Marrow Transplant
NBC Chicago
A 2-year-old boy whose story touched hundreds across the Chicago area as he battled a rare disease has received a life-saving bone marrow transplant. Sawyer Wright was diagnosed in February with a-plastic anemia, a condition where the immune system ...

Tuesday, July 26, 2016

ABC Online

Australian patients to get access to genome tests used to diagnose ...
ABC Online
Australian patients with rare genetic conditions now have access to world-class technology to get a more accurate diagnosis.
First ever whole genome testing in Australia opens at the Garvan ...The Sydney Morning Herald

all 8 news articles »
Tuesday, July 26, 2016

Metro

Arsenal news: Former starlet Kyle Ebecilio diagnosed with rare disease
Metro
Kyle Ebecilio, the former Arsenal youth prospect, has been diagnosed with Guillain Barre Syndrome – a rare disease which causes the body's immune system attacks the nervous system. Born in Rotterdam, Ebecilio was snapped up by Arsene Wenger in ...

Tuesday, July 26, 2016

Nottingham Post

Former Nottingham Forest loan signing Kyle Ebecilio diagnosed with rare disease
Nottingham Post
Former Nottingham Forest loan signing Kyle Ebecilio has reportedly been diagnosed with a form of a rare disease where the body's immune system attacks the nervous system. Twenty-two-year-old Ebecilio, who played five times last season after joining on ...

Tuesday, July 26, 2016

Daily Mail

Carlisle girl is allergic to sunlight in extremely rare case
Daily Mail
A schoolgirl who suffers from a rare disease that leaves her allergic to daylight is forced to wear a mask whenever she leaves the house - to protect her from cancer. Alice Tyson, 11, has suffered with Xeroderma Pigmentosum (XP) since she was a baby ...

Monday, July 25, 2016

FierceBiotech

Pfizer, NEA-backed rare disease startup bumps up Series A to $42M ...
FierceBiotech
The first spinoff from Cydan, an orphan disease incubator created by Pfizer Ventures and New Enterprise Associates, is headed full steam ahead. Known as ...
Gaithersburg's Vtesse Inc. nabs $17 million in additional Series A ...Washington Business Journal
Vtesse Secures Additional $17 Million in Series A Extension to ...PR Newswire (press release)

all 3 news articles »
Monday, July 25, 2016

The Chattanoogan

Chattanoogan With Very Rare Disease Waiting For Bone Marrow Transplant
The Chattanoogan
A 27-year-old Chattanoogan has been diagnosed with a very rare disease and is awaiting a bone marrow transplant. Billy Joe Williams is among some 200 people in the world with IPEX Syndrome. His father, Michael Williams, said IPEX Syndrome ...

Monday, July 25, 2016

Belleville News-Democrat

'Death by papercut': O'Fallon family cares for son with rare disease
Belleville News-Democrat
Batten disease is a rare, genetic and usually fatal disorder that preys on the nervous system. According to the National Institute of Health, the body's cells aren't able to dispose of waste, so the proteins and fats that are meant to be disposed are ...

Monday, July 25, 2016

Loudoun Times-Mirror

After losing her daughter to a rare disease, a Loudoun mother gives back to children like her
Loudoun Times-Mirror
The 5-year-old suffered from a rare and fatal disorder called Cockayne Syndrome that causes growth failure, impaired nervous system development, sensitivity to sunlight and many symptoms associated with premature aging. There is not much known about ...