PatientCrossroads Launches New Patient RegistriesThe new rare-disease registries arose from the NIH Global Rare Diseases Registry (GRDR) pilot program
San Mateo, Calif. (PRWEB) September 04, 2014
PatientCrossroads announces the launch of five new patient registries on behalf of leading rare disease advocacy organizations. The new registries are sponsored by organizations originally selected by the NIH to participate in its Global Rare Diseases Registry and Repository (GRDR) pilot program. Five New Patient Registries Launch Through the PatientCrossroads Program include: The Barth Syndrome Foundation, Foundation for Sarcoidosis Research, Lymphangiomatosis and Gorhams Disease Alliance, NephCure Kidney Network and PSC (Primary Sclerosing Cholangitis) Partners Seeking a Cure registries have been launched using the PatientCrossroads registry platform. Read more>>
‘A rare young lady’: Despite illness, girl handles life like a champ
By Isaac Groves / Times-News
Published: Wednesday, September 10, 2014 at 05:31 PM.
“I really like to play and sing,” she said. “And my favorite thing is going out to eat with my family.”
She has also been hospitalized several times in the past year with a rare kidney problem, and she and her family are raising money to fund research to help people like her.
“I have nephrotic syndrome,” she said. Read more>>
Iowa-ISU backers running for bragging rights and charity
Posted Online: Sept. 10, 2014, 9:39 pm
Roughly 100 participants – most as part of relay teams – will run a 125-mile rout from Ames to Iowa City beginning today, September 10, and ending on tomorrow. Along with the bragging rights aspect, the event is also a fundraiser that benefits NephCure Kidney International. Read more>>
‘We Have a Long Road Ahead of Us’10-Year-Old Union Boy Lives With Rare Kidney Disease
Posted: Wednesday, September 17, 2014 6:32 pm
By Karen Cernich, Feature Writer
Sitting on the living room floor of his Union home building a toy car out of Legos, Bradley Scott looks like an average 10-year-old, but to doctors treating him for the rare kidney disease FSGS, he’s something of a medical mystery.
“He’s been rewriting the medical books since he was a baby,” Bradley’s mom, Amanda Scott, remarked. “I think every specialist that we’ve seen says he’s rewriting the medical books.” Read more>>
Northern VA Home Improvement Company Supports Fairfax County Public SchoolsPRWeb | September 20, 2014
Moss Building and Design, a family-owned remodeling company in Fairfax County, is always looking for ways to give back to the community they work and live in. Giving back to the local community is an important goal of the remodeling company whose efforts include school sponsorships as one of the many ways they give back.
Moss’ community involvement also includes sponsoring local golf tournaments, supporting the local NephCure foundation, building the haunted house structure for Bradley Farm Haunted House, and even rebuilding the roof of the dug-outs at Chantilly Park for Chantilly Little League. Read more>>