Do you or someone you know have SCD?
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 on the forum
- A rooster of topics will be shared ahead of each month
Consequences of non-adherence
Tips to reduce frustration around too many notifications
If you think you are receiving too many notifications, you may hit “Mute” on the WhatsApp forum. You will still receive all the messages, but your phone will not send you a notification when there are forum updates.
If you agree with the terms of the guidelines, click here to join the group
Link to join the group