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NSCAN, with the assistance of an Expert Advisory Committee, will develop and implement a patient-centered training curriculum and mentor program in an effort to:
Receive updates from clinicians and patients regarding therapeutic options for SCD
Determine/develop relevant patient outcome measures for SCD
Create partnerships with academic institutions, industry, and foundations to advance PCOR/CER projects
Increase SCD patient partnering with clinicians on PCOR/CER projects. Upon completion of a developed curriculum and implemented program, 25 trained patient/parent facilitators will expand the network in their respective areas/states to 50 additional network participants/facilitators, an effort to educate over 625 advocates.
Project Collaborators: SCDAA has enlisted several collaborators to ensure the success of this project. Such collaborators include: The SCDAA Medical Advisory Council, 42 community-based member organizations, The New Jersey Sickle Cell Association, Inc., and Leidos, Inc.
people & placesAdrienne ShapiroAdrienne is a fourth generation of mothe...
people & placesAde AdeyokunnuAde Adeyokunnu manages the day-to-day op...
news & eventsNew drugs promise hope this World Sickle Cell DayThis winter, Shakir Cannon, a 34-year ...
videos & visualsSickle Cell – Howard Frenchhttps://www.youtube.com/watch?v=zTHYz3Kf...
news & eventsIASCNAPA Sickle Cell Disease Conference: Treating the Whole PersonDate: April 14-15, 2021 Place: Online/V...
videos & visualsSickle Cell Disease Managing Painhttps://www.onescdvoice.com/wp-content/u...
Community Center#RAREis Scholarship FundLiving with a rare disease means managin...
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This platform is made possible through a partnership with the Sickle Cell Disease Association of America, Inc. (SCDAA) and its member organizations. SCDAA's mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.