ONLINE SUPPORT: The Short Version
Li-Fraumeni Syndrome Support Group: private Facebook group specifically for those living with LFS, their caregivers, and parents of minors with LFS.
Li-Fraumeni Support Group – Men’s Club: private Facebook group specifically for men living the LFS life to discuss the unique challenges they face.
Li Fraumeni Syndrome Family and Friends: private Facebook group for those who supporting someone living with LFS.
Each of these groups provides a private place to ask questions and share experiences.
Facebook Page & Support Groups: More Details
Living LFS is a Facebook Page that is open to the public. All content, including posts by our organization and posts by you to the page can be seen by all Facebook users. We encourage you to “Like” and “Follow” this Page for Living LFS recommended news, research, blog posts, event information, opportunities to connect with others, and mutant humor!
Li-Fraumeni Syndrome Support Group is a private Facebook group with people from all over the world who understand what it is like to be Living LFS. We limit this group to those with LFS, their primary caregiver, or for those undergoing testing for the P53 mutation. Only members of the group can see posts and news feed. A Closed Group allows a private and safe place for those with LFS to share experiences and provide support. We strongly feel that this Group mitigates the isolation that comes with Living LFS. Mutants here are pretty awesome. Once you ask to join this Group, the Group’s Administrator (a member of the Living LFS Board of Directors) will contact you via Facebook Messages to discuss your connection to LFS (Note; this communication may not appear in your normal “Inbox”. Be sure to review your “Other” messages).
Li-Fraumeni Support Group – Men’s Club is a place for men who are living within the blast radius of a Li-Fraumeni syndrome diagnosis. This private Facebook group is provided by Living LFS specifically for men 18 years of age and older who are diagnosed with Li-Fraumeni syndrome, parents of minors with LFS, and caregivers of people with LFS. As with the other private groups, only members of the group can see posts and news feed, and a member of the Living LFS Board of Directors may contact you prior to admittance, so check your “other” messages on Facebook.
Li-Fraumeni Syndrome Family And Friends is also a private Facebook group. Only members of the group can see posts and news feed. This provides a private place for those who know and love those affected by LFS to get support and share stories. We encourage friends, family members, clinicians and anyone touched by LFS to ask to join the group. Behind every mutant is a terrific support system and we are most grateful for this. The group is also managed by Living LFS. As with the other private groups, only members of the group can see posts and news feed, and a member of the Living LFS Board of Directors may contact you prior to admittance, so check your “other” messages on Facebook.
Other Online Support Groups
SLF – Síndrome de Li – Fraumeni – Brasil is a Facebook Closed Group started by those with LFS in Brazil and is carried out in Portuguese. Only members of the group can see posts and news feed.
Several forums discussing breast cancer specific topics.