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).
If you have a special friend or family member who would benefit from being included and who could contribute their wisdom and support, please ask them to join the SWF via the website CONTACT. We always welcome the involvement and interest of new people. The general SWF Facebook page can be used to help people understand the complexities of this rare disorder.
The Foundation has two Facebook Pages available to people affected by SWS and associated PWB conditions:
The Sturge-Weber Foundation Page - a public Facebook page that members, friends, and family. This page is monitored by the Foundation and accepts requests to be friends with out requesting an invitation.
The Sturge-Weber Foundation World of Care and Share Network - a private Facebook page that requires an invitation to join.
To join this page, send a request to be invited to firstname.lastname@example.org.
The Foundation's Facebook pages are environments to connect, exchange information, find understandings and build friendships. We are committed to providing a safe, welcoming community. We encourage your comments, photos, videos, questions and links. In our effort to provide this environment, there are some guidelines we ask you to follow. Below are the guidelines:
No Medical Advice
Posts on 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.