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.
A new research project is looking for teens 13 – 17 years old to assist with the development of Pinpoint, a new tablet app that helps young Sickle Cell Disease (SCD) patients assess and talk about their pain.
Click link below for more information:
Pinpoint Usability Flyer
Get a jump on your Father’s Day shopping and help support a good cause!
Check out The Heart of Gold Sickle Cell Foundation of Northern Virginia latest fundraiser and learn how you can help
Donating to the DC Diaper Bank keeps bringing diapers to babies in need
The DC Diaper Bank provides diapers to social service organizations that are already helping families in need through comprehensive programs and services. As of October 2015 there are 30 organizations in the Diaper Distribution Network and growing each month. Collectively, the Distribution Network works to get an average of 100,000 diapers and other hygiene items to 3,200 families each month in Washington, DC, Maryland, and Virginia.
DC Diaper Bank has found that distributing diapers in this way ensures they reach those who need them most. It also provides partnering organizations a resource – diapers – they are not normally able to provide, increasing the services they can offer. By working with organizations that are already well established in the community and currently working with families in need, the DC Diaper Bank ensures that the diapers collected are distributed to infants and babies in the most efficient and timely manner. If you would like to learn more about becoming a Diaper Distribution Partner please contact email@example.com
Sickle Cell Conferences and Events
The Sickle Cell Disease (SCD) Program at Children’s National invites you to the 7th Annual Family Education Symposium on “Living Well with Sickle Cell”.
Saturday, October 29, 2016 11:30 AM – 4:30 PM
Sheikh Zayed Campus for Advanced Children’s Medicine Children’s National Health System 111 Michigan Ave NW, 2nd Floor, Auditorium
Washington, DC, 20010
This year’s symposium will focus on helping patients and their families manage sickle cell disease while living life to the fullest.