Google
Trusted Resources: News & Events
Latest announcements and gatherings
The National Sickle Cell Advocate Network (NSCAN)
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.
+myBinderRelated Content
-
Shalonda WarrenShalonda is Chief Executive Officer at S...
-
Angels in Heaven Memorial BookletInternational Association of Sickle Cell...
-
What’s in your genes?https://www.youtube.com/watch?v=ggeqOj07...
-
Today’s Faces of Sickle Cell Disease: Marqus ValentineWhen Marqus Valentine went to junior col...
-
‘Sickle Cell Speaks’ Campaign Raises Awareness with Aim of Eroding Stigmas, GBT and Partners SayIn partnership with community organizati...
-
Sickle Cell Foundation Nigeria, Rhieos Develop 1st Multi-SCD Registry in NigeriaIn a bid to improve quality of care for ...
-
Rare Disease Day Symposium at the Quinnipiac Frank H. Netter MD School of MedicineSince 2015, the Frank H. Netter MD Schoo...
To improve your experience on this site, we use cookies. This includes cookies essential for the basic functioning of our website, cookies for analytics purposes, and cookies enabling us to personalize site content. By clicking on 'Accept' or any content on this site, you agree that cookies can be placed. You may adjust your browser's cookie settings to suit your preferences. More Information
The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.
Powered by
SomeBodyToTalkTo connects people affected by rare diseases with trusted resources, supportive communities, and opportunities to share their experiences.