Global Sickle Cell Disease Family Network

Do you or someone you know have SCD? Will you like to connect with other families affected by SCD across the globe? To join GASCDO's Global SCD Family Network, you must agree to our guidelines below.   Guidelines for The Global Sickle Cell Disease Family Network Description  A patient-centered online network created to support the primary sickle cell disease community globally (individuals living with SCD, their families and patient organizations). Objectives Empower and educate patients and families on various topics including tips on managing sickle cell disease (SCD), clinical trials and research studies Build awareness and increase the level of knowledge/understanding of SCD among people of all ages and backgrounds, wherever they reside Determine the educational and support needs of those living with SCD, their caregivers and patient organizations Connect families with SCD to the patient organizations in their localities Connect patient organizations to one another Reduce stigma and discrimination experienced by persons living with SCD all over the world. Who can join?  People living with SCD, Families, caregivers, friends and co-workers of people living with SCD Patient organizations, Advocates and volunteers of the SCD community. What can be shared on the forum Strictly SCD related news, stories and updates All information to be shared must be vetted by at least one of the administrators of the forum. Proposed materials must be forwarded to at least one of the administrators a minimum of 72 hours before the intended posting date. Only approved materials may be posted. Other rules of the forum No one-on-one conversations on the forum Acknowledge questions/ surveys if asked. If unable to, please send a private message to the administrators The forum is not a political platform, no arguments or disrespect allowed Ensure that you are posting accurate information, check your sources before you share Never EVER use the forum to berate someone else or air grievances. If you have an issue, address it with the relevant person outside of the forum The forum cannot be used to promote personal business Drugs approved by National health agencies may be promoted.  Topics Once a week, administrators will post a topic for people to discuss, please ensure you participate as much as possible We may also invite care providers, patients and families to address and lead some of the discussions...

SUBSCRIBE TO OUR NEWSLETTER

The GASCDO Community Newsletter connects you with people living with sickle cell disease and the work being done globally by NMOs and RMOs. The newsletter includes Newsletter Global SCD Family Network Global Care Providers Network SUBSCRIBE TO OUR NEWSLETTER First Name Last Name Email: Country Afghanistan Aland Islands Albania Algeria American Samoa Andorra Angola Anguilla Antarctica Antigua and Barbuda Argentina Armenia Aruba Australia Austria Azerbaijan Bahamas Bahrain Bangladesh Barbados Belarus Belgium Belize Benin Bermuda Bhutan Bolivia Bonaire, Saint Eustatius and Saba Bosnia and Herzegovina Botswana Bouvet Island Brazil British Indian Ocean Territory British Virgin Islands ...