The SSRA/LWSS encourages community engagement and we appreciate the diverse ideas and sentiments of our online audience. We maintain a presence on several social media sites as part of our commitment to transparency and to keep those in the superficial siderosis community apprised of our news and activities.
Our social platforms are safe spaces for sharing and discussion, and tools the superficial siderosis community can use to support people with superficial siderosis and fight this disease. We welcome your questions and comments. To keep our communities and conversations focused and helpful, and to ensure a safe space for all of those in the superficial siderosis community, we have updated our community guidelines for our social media platforms.
All SSRA/LWSS social platforms are public
Because our social media pages are public, anyone can engage with us. We cannot be responsible for content or views other than our own and we cannot validate the accuracy of statements made and posted by others. Do not share any personal information on our social media sites, including but not limited to the personal information you do not wish to be seen by the public, account numbers, social security numbers, passwords or PINs. By posting on our social media sites, you grant The SSRA/LWSS the right to use or reproduce your content, including unsolicited ideas.
There are several private groups on the Facebook platform where conversations are private and questions may be asked of other community members. Links to these groups may be found on livingwithss.com.
Our social platforms are safe spaces for sharing and discussion
Our community thrives when we share ideas and sentiment and we want to hear all voices. We ask that you ensure your posts are relevant and respectful. Questions and feedback are welcome, including constructive criticism. We will respond to and correct factually inaccurate information that is posted to our page and dispel any misinformation.
We reserve the right to remove any content and block users related to posts that we determine to be:
- Abusive, threatening, libelous, defamatory or disparaging of others
- Obscene, vulgar, sexually explicit or depicting violence
- Hateful to any individual, group, community, or organization
- Excessively repetitive, SPAM or disruptive to dialogue
- Fraudulent, deceptive, misleading or unlawful
- References to proprietary, confidential, or non-public information from or about The SSRA/LWSS
- Solicitations for products, services, or outside surveys and petitions
- Fundraising for outside organizations or individuals without prior consent
Stay on topic
Any comments you post should be relevant to the topic at hand. We reserve the right to ban those who post irrelevant content to our social sites.
We never share medical information
The SSRA/LWSS serves people living with superficial siderosis throughout the world. Medical information gathered from this community is never shared on our social networks. Before you post any information about someone living with a superficial siderosis diagnosis, please ensure that the individual has agreed to have their diagnosis or medical status shared publicly.
Is it yours?
Are you the rightful owner of the content you post? Please do not post content or materials that don’t belong to you. This includes images, video, music and other intellectual material that is not properly licensed or credited.
Do not offer/solicit medical advice
The SSRA/LWSS social media platform is not the place to solicit medical advice. Living With Superficial Siderosis and the SSRA is not a medical provider or healthcare facility and thus can neither diagnose superficial siderosis or associated symptoms nor endorse or recommend any specific medical treatments. The information presented on these social media platforms is intended for the benefit of the superficial siderosis community.
Patients must rely on the personal and individualized medical advice of their qualified healthcare professionals before seeking any information related to your particular diagnosis or treatment of superficial siderosis or associated symptoms. Our fellow advocacy group, The Silent Bleed, offers an “Ask The Doctor” page on their website where you may submit medical questions directly to Dr. Michael Levy. The link to this page may be found on livingwithss.com.
The SSRA/LWSS is not responsible for third party websites or content appearing on our site
The SSRA/LWSS does not endorse third-party websites or content that may be linked to from our social networking websites. Please review the privacy and security practices, and policies of any third-party websites that you visit.
Please direct any questions about our social media platforms to [email protected]