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  1. 5 Wins the SCD Community Has Achieved

    August 3, 2015 by Andrea


    While we still have a long way to go when it comes to raising awareness of sickle cell disease, we also must take time to recognize just how far we have come. Here's a snapshot of 5 wins the SCD community has achieved in recent months:

    1) Because of this White House petition and the #SpeakOnSickleCellObama social media campaign, the President has made sickle cell a priority for his administration -- just as we'd hoped.

    2) As an example of this priority, the Department of Health and Human Services has been tasked with finding better ways of identifying people with SCD, improving health care access for warriors, studying data to advance treatment programs, raising awareness, promoting SCD education, and working toward developing a cure.

    3) The Department of Health and Human Services has also launched Healthy People 2020, part of which includes developing actions to help prevent sickle cell, to reduce hospitalizations, and to increase treatment and education.

    4) Evaluation of the goals listed above will continue via the RuSH project. Initially launched in 2010, RuSH (Registry and Surveillance System for Hemoglobinopathies) gathers information on people living with SCD to better understand their needs.

    5) More federal funds have been allocated toward SCD research. The National Institutes of Health is researching current and new treatments, how to lessen complications of sickle cell, and how to develop a possible cure. The CDC is also researching sickle cell disease and developing more educational programs.

    Keep these 5 things in mind as a constant reminder that your efforts are important and that they are working. Continue doing what you're doing and more wins are sure to come.


    *SOURCE: Whitehouse.gov

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  2. Good Things Happen When the SCD Community Comes Together

    October 20, 2014 by Andrea

    Remember when we said this?

    Well, in the past few weeks, the sickle-cell community has really stepped up! How? We've SURPASSED the goal number of signatures (100,000) for the petition to The White House to make sickle-cell disease a national health priority. At the time of this post's publication the number stood at 109,478. It doesn't have to stop there -- keep signing! The petition is still active until October 22, 2014. 

    This petition seeks to have the government reauthorize the Sickle Cell Treatment Act to help expand the national newborn screening program, augment research opportunities, develop up to 25 sickle-cell treatment facilities all over the country, and so much more. This is an exciting time for the SCD community. Here's how #TeamSickleCell, including some celebrities, have been reacting to this awesome news:




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