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.
During Sickle Cell Awareness Month make a pledge to start a conversation with co-workers, neighbors and friends about the importance of knowing their sickle cell status.
Statistics on Sickle Cell Disease continue to rise because no one IS willing to start a conversation. How many people do you know have talked about starting a family, but never considered the importance of knowing their Sickle Cell status?
Many states now require children to be screened at birth for Sickle Cell disease but as adults, no one remembers or considers the importance of knowing if they carry the Sickle Cell trait?
If both the mother and father have the Sickle Cell trait, they run the risk of having a child born with Sickle Cell. This is not to put blame on anyone, but rather encourage our community to get educated about SCD.
The Jewish community lowered statistics on Tay-Sachs disease by 95% through vigilant screening programs and a commitment to educate people. Their plan enlisted the support and infrastructure of the Jewish community to host screenings at synagogues and community centers. The support of Rabbi’s was also a big factor in the success of their efforts.
It is our goal to understand why African American and Hispanic communities are unwilling to do the same. How can the Sickle Cell Community obtain support from churches and ministers, civic organizations and the medical community to get everyone to check their Sickle Cell status?
It is so important to start conversations about Sickle Cell disease so that future generations will never have to worry about ” breaking the Cycle.”
Tell us what you think. Read the article about how the Jewish community beat Tay-Sachs disease and let us know if you think we can do the same for Sickle Cell Disease ?
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
World Sickle Cell Day is on 19th of June. Wearing red for sickle cell day was established by the United Nations General Assembly in 2008, to raise awareness about the sickle cell disease globally. Sickle cell affects us all directly or indirectly and it has affected and continues to affect many families who have lost family members as a result of the condition. Contrary to common knowledge, people in other countries are also affected like India, Saudi Arabia, Turkey, Arabic Peninsula, Brazil, Surinam, Guiana, Southern Italy, Greece. Studies have shown that Nigeria has the largest population of people with Sickle Cell Disease in the world, and with over 150,000 Nigerian babies born with sickle cell every year.
With proper care and treatment, persons with Sickle Cell can lead a relatively good quality life.
It is important that everyone knows their status before starting a family.
Get a jump on your Father’s Day shopping and help support a good cause!