-
CheckOrphan NewsFlash April 30,…
4/30/2010
CheckOrphan NewsFlash for Tuesday, March 30, 2010: breaking news about rare diseases, orphan diseases, orphan drugs,…
-
CheckOrphan NewsFlash April 9,…
4/09/2010
CheckOrphan NewsFlash for Friday, April 9, 2010: breaking news about rare diseases, orphan diseases, orphan drugs, and…
-
CheckOrphan NewsFlash April 1,…
4/01/2010
CheckOrphan NewsFlash for Thursday, April 1, 2010: breaking news about rare diseases, orphan diseases, orphan drugs,…
NewsFlash
-
Men 2010: 12th International…
16–18 September, 2010
This two-day meeting will provide a forum for educating basic and clinical…
-
Ribonuclease H2010
20–22 September, 2010
We expect to bring together scientists interested in making as much…
-
Third Annual Ultra Orphan…
27–29 September, 2010
Centric Health Resources Presents Third Annual Ultra Orphan Conference…
-
Brain, Blood and Iron: Joint…
1–2 October, 2010
The overall objectives of this workshop are to (1) define NA and NBIA…
Events
-
Tot With Disorder Is 'the Happiest Kid'
Friday, September 3, 2010
When most people get a cold, they cough and sneeze and sniffle until it goes awayCharlie-Anne Cox can't do that. The 14-month-old's muscles are too weak to cough and the mucus drains into her lungs"Just taking a breath, that's just running a marathon for her, it sounds like at times," says her da
-
Norfolk Baby's Life Hangs by a Thread
Friday, September 3, 2010
A community is rallying to fund comforts and pleasures for a seriously-ill north Norfolk baby whose life could end at any timeLittle Lauren Taylor has the rare chromosome disorder Patau's Syndrome and is blind, partially deaf, needs extra oxygen to breathe, is tube fed, has kidney problems, extra
-
Goddess Hair Extensions Founder Nominated for American Cancer Society Award
Friday, September 3, 2010
SUNNYVALE, Calif. -- Sheila Matechuk, Developer of Goddess Hair Extensions & Replacement, has been nominated for the American Cancer Society's prestigious "Lane Adams Award" honoring individuals who "demonstrate innovative and collaborative approaches to enhancing the quality of life for Mate
-
St. Jude, Chili's Expand Online Giving Efforts During Seventh Annual Create-a-Pepper to Fight Childhood Cancer Campaign
Thursday, September 2, 2010
MEMPHIS, Tenn. - St. Jude Children's Research Hospital® and Chili's® Grill & Bar are tapping into the power of the digital world, making it easier than ever for guests to donate to St. Jude during the seventh annual Create-A-Pepper to Fight Childhood Cancer campaign. September is Chili
-
Inaugural Fundraiser to Be Held to Stop Rare Disease
Thursday, September 2, 2010
The luminous glow of a firefly in the dark sky can be seen as a symbol of hope that blinks its way through the nightFor those affected by mitochondrial diseases, however, the firefly represents even moreMitochondria, the energy factories of cells, help fireflies light up and that same cell organ
-
Fundraiser Nets $4,300 for Infant With Rare Cancer
Thursday, September 2, 2010
A total of $4,300 was raised for 9-month-old Carter Beckner at an event Saturday at the Crossroads Ruritan ClubNearly $1,900 was raised by a benefit softball tournament earlier this month. Approximately $5,900 has been donated to the child who is being treated from Neuroblastoma. The disease is a
-
KU Alumna's Outlook on Life a Positive Influence She Left Behind
Thursday, September 2, 2010
When Stan Loeb tells people about Jessica Roark, he often talks about her positive outlook. But it often just sounds inadequate, he admitsThe words don’t seem to do much justice in describing the KU alumna from Meriden who earned two degrees while battling a rare form of cancer“She ne
-
Hannah's Hope Wins $250,000 Prize
Wednesday, September 1, 2010
Hannah's Hope won a $250,000 prize, according to a Pepsi officialThere was confusion earlier Wednesday about whether the charity founded by a Clifton Park family had won the grant in a Pepsi Refresh contest. Only the top two finalists receive the grants, and Hannah's Hope was listed as "3rd place"
-
The Global Genes Project Aims to Battle Rare Disease Through the 'Vote4Hope' Campaign and Pepsi Refresh Competition
Wednesday, September 1, 2010
DANA POINT, Calif. - All Kids Deserve To Have Hope For A Cure – The 'Vote4Hope' Pepsi Refresh Rare Disease Campaign starts today. The Children's Rare Disease Network (www.crdnetwork.org) and The Global Genes Project (www.globalgenesproject.org) are inviting the public, as well as caregivers,
-
Inaugural Berkshire County Walk to Defeat ALS Aims to Bring Awareness and Funds to Lou Gehrig's Disease
Wednesday, September 1, 2010
On Aug. 28, sitting in a purple beach chair on the patio of his parents’ Becket lake house, John Keator, an average-built 44-year-old with cropped salt-and-pepper hair, chatted with friends. Keator and his wife, Georgette, had invited their friends to the lake for one last get-together before
