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High-dose dexamethasone confers favorable outcomes in adult primary ITP
"High-dose dexamethasone may be a preferred corticosteroid strategy compared with conventional prednisone for first-line treatment of adult primary immune thrombocytopenia, according to the results of a randomized prospective study.
Prednisone currently serves as the standard initial treatment for adult patients with primary ITP, according to study background. However, only a small number of patients treated with prednisone achieve long-lasting remission."
- From healio.com, January 5, 2016
What the Omnibus Bill Means for Rare Diseases
"The House and Senate voted Friday to pass an omnibus spending bill that funds the government through September 2016. Included are several important developments for the rare disease community:
First, the NIH sees a billion boost (7% increase) in funding and the FDA has an additional 2 million (5% increase), including a .5 million increase to the orphan products grants program, which is fantastic news all around. Second, the rare pediatric disease PRV program was extended through September. It had been set to expire in March.
These are policy wins that NORD has advocated for on behalf of the community."
- By Jennifer Huron, RareDiseases.org
Parents dedicated to getting their daughter a cure asks the community for help
"An 8-month-old baby has a blood disorder that is so rare, her family only found 100 cases of it, worldwide.
It's a disease that limits Olivia Tesh's time here on earth, but there is a cure. Now, her parents, who dedicated their career to serve others, are asking our community for help. "There's a lot of hope for her. She's only 8 months old, and I just want to see her get better," said mom Stayce Tesh."
- By Christine Kim, 3 News Las Vegas
"Making the world of ITP a more manageable place to be"
The Platelet Disorder Support Association is dedicated to enhancing the lives of people with immune thrombocytopenia (ITP) and other platelet disorders through:
Education • Advocacy • Research • Support
Comprehensive information on conventional therapies usually prescribed for ITP as well as therapies outside of the usual medical mainstream that some patients with ITP have used successfully.
Advocacy helps build awareness and support for ITP and other platelet disorders. Everyone interested in having more people know about ITP, having greater access to treatment, and getting more funding ITP and related diseases can help.
ITP Conference DVDs, free booklets and pamphlets, diet and lifestyle information, PDSA newsletters, journal articles and abstracts, PDSA E-News.