Sickle cell disease patients and those who stand with them are invited to pre-register for free access to oneSCDvoice.com, an empowering online community launching later this month (December).
Promoted as “A Sickle Cell Community Tailored to You,” oneSCDvoice will deliver trustworthy information to help people affected by sickle cell disease know more about it, learn of promising new treatments being tested in clinical trials (and how to access those new treatments as a clinical trial participant), more easily tap into needed support, and above all improve the quality of their lives.
oneSCDvoice.com is the creation of sickle cell healthcare providers, advocacy leaders, pharmaceutical manufacturer Pfizer, Inc. and health technology company rareLife solutions.
This collaborative digital education platform provides professionally vetted links to credible information about SCD, about lifestyle issues related to the disease, and about how to get more and better help coping with this devastating genetic condition.
In 2008 the General Assembly of the United Nations adopted a resolution that determined Sickle Cell Disease a public health problem and one of the world’s foremost genetic disease. The result was that June 19th was declared as World Sickle Cell Day to heightened awareness, activism, diagnosis and management of SCD around the world.
The Heart of Gold Foundation Inc. of Northern Virginia invites you to join our first 2013 World Sickle Cell Day balloon release ceremony in honor of those who have lost their lives to SCD and to raise awareness that SCD is a global health problem!
WHEN: Saturday, June 22nd
TIME: 10:00 a.m. To 12:00 p.m.
WHERE: Fort Ward Park, Area 1
4301 West Braddock Road
Alexandria, VA 22304
THEME: Speak Up
Speak, About Sickle Cell
The ignorance of Sickle Cell has led to the ignoring of Sickle Cell