Latest News

Sunday, October 22, 2017

WQAD.com

Illinois family throws a one of a kind birthday party for son battling a rare disease
WQAD.com
Joey has CLN3 Battens disease, a rare genetic mutation in the blood that will eventually cause blindness, lack of motion and juvenile Alzheimer's. With a life expectancy anywhere from age 16 to 30, the Bauer family says they want to make each special ...

Sunday, October 22, 2017

Nottingham Post

Rare disease means eight-year-old girl can only eat nine safe foods
Nottingham Post
A number of people came together today (Sunday, October 22) to raise awareness of a rare disease which means one young girl is only able to eat nine foods safely. Lily Mason, eight, who lives in Keyworth with her mother, Joy, father, Philip and younger ...

Sunday, October 22, 2017

africanews

Rare Marburg virus disease kills at least one on Uganda-Kenya ...
africanews
At least one person is confirmed to have died of the Marburg virus disease(MVD) that has appeared in eastern Uganda on the border with Kenya.MVD is a rare ...
WHO working to contain rare virus of same Ebola family on Uganda-Kenya borderXinhua
WHO Handles Outbreak of Marburg Virus in UgandaPrensa Latina

all 24 news articles »
Friday, October 20, 2017

WQAD.com

Birthday wish comes true for Illinois boy battling a rare disease
WQAD.com
BUDA, Illinois - Joey Bauer takes his time opening each card with care, it's the only thing this soon to be 13-year-old wants for his birthday. "We were hoping for a couple hundred cards to help his birthday and we've gone so way past that," said ...

Thursday, October 19, 2017

Huntington's Disease News

#NORDsummit – Despite Criticism, Orphan Drug Act Is Working to Advance Needed Treatments, FDA Says
Huntington's Disease News
As Congress begins debate this week to overhaul the U.S. tax code, lawmakers should leave the Orphan Drug Act (ODA) — and the tax incentives it offers pharmaceutical companies to develop therapies for rare diseases — off the table. That's the message ...

and more »
Thursday, October 19, 2017

ALS News Today

#NORDsummit – Despite Criticism, Orphan Drug Act Is Working to Advance Needed Treatments, FDA Says
ALS News Today
As Congress begins debate this week to overhaul the U.S. tax code, lawmakers should leave the Orphan Drug Act (ODA) — and the tax incentives it offers pharmaceutical companies to develop therapies for rare diseases — off the table. That's the message ...

and more »
Thursday, October 19, 2017

Local 'angel' helps boy with rare disease make his appointments in Philadelphia
WSET
Norien's doctor is in Philadelphia, and is one of the only doctors would be able to help Norien eventually be able to stand; and expense Tess said her family could no longer afford, but, lucky for them they found out about "Angel Flight East." (Photo ...

Thursday, October 19, 2017

York Daily Record/Sunday News

Rare disease tests, and unites, this York, Pa. farming family of eight
York Daily Record/Sunday News
Sean Kisielnicki, 7, of Hopewell Township, is cognitively impaired from Hunter syndrome, a rare and fatal disease caused by an enzyme deficiency. Learning ice ...

and more »
Thursday, October 19, 2017

Philippine Canadian Inquirer

PGH awaits IRR on rare disease law
Philippine Canadian Inquirer
MANILA — The Philippine General Hospital (PGH), together with the National Institutes of Health (NIH) and the Philippine Society for Orphan Disorders (PSOD), expressed hope that the Department of Health would soon complete the Implementing Rules and ...

Thursday, October 19, 2017

The Columbus Dispatch

Group fighting rare disease Transverse Myelitis carries on without founder
The Columbus Dispatch
The rare disease struck her spinal cord without warning, leaving an otherwise healthy 35-year-old woman suddenly disabled from the waist down. Pauline Siegel waited days for a diagnosis. When it came, it was little help. Research was scarce, because ...