Getting Connected on Facebook
The World of Care and Share Network was started a short time ago so that SWF families could utilize their existing knowledge of social media to connect with other SWF families without the whole universe being able to read their stories.
We understand that you want to reach out to your own general circle of family and friends, but please, do not ask us to add people to the group who are not patients or family of persons with SWS, KT, or PWB and who are not known to the SWF as members. They must request this from SWF themselves. This will allow us to keep everyone's confidentiality and privacy as guarded as possible (within our means).
Social Media Disclosure:
No Medical Advice
Posts on the SWF Facebook page are for educational purposes only and not for the purpose of rendering medical advice. This information presented is not intended to replace the counsel of your physician. SWF does not endorse any medications, products, equipment, or treatments for Sturge-Weber syndrome and associated Port Wine Birthmark conditions.
- The SWF Facebook page is monitored by Foundation Staff. We reserve the right to remove posts that violate the community and our guidelines.
- Please do not engage in abusive behavior or conversations. We will remove comments that are harassing, threatening, harmful, obscene, racially offensive, sexually explicit, or otherwise inappropriate.
- Please do not engage in solicitation of funds or promotion of fundraisers for yourself or other non-profit organizations on the SWF page.
- Posts that advertise, promote services or products, or distribute unsolicited information for financial gain will be removed. SWF will ban users who repeatedly try to sell their products or engage in inappropriate comments or actions.