Source:  Support    Tag:  whole body mri screening

Facebook Page & Support Groups

Families who have this condition are rare and special.  Facebook has given us the power to network, share stories, ask for advice, and make friends around the world.  If you are not a member of Facebook, we highly recommend that you join - if only to connect with our Facebook Page or Closed Groups!

 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 Facebook Closed 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 Living LFS Board of Director) 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 Syndrome Family and Friends Group is also a Facebook Closed Group.  Only members of the group can see posts and news feed.   This Closed Group allow 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 currently managed by Living LFS.

SLF-Sindrome de Li-Fraumeni is a Facebook Closed Group started by those Living LFS in Brazil and is carried out in Portuguese.  Only members of the group can see posts and news feed.    

Other Support Groups

MDJunction Li-Fraumeni Syndrome Support Group is a community of patients, family members and friends dedicated to dealing with Li-Fraumeni Syndrome, together.

The George Pantziarka TP53 Trust Forum aims to provide a central forum so that sufferers, their families and friends, doctors and researchers can all make contact. Please register on the forum and introduce yourselves – you'll be most welcome.

While most of our support work is carried out in these Facebook groups, we recognize that not everyone uses this forum and we have other options for connecting with us:

Email: Email us at [email protected]  We are spread across 5 time zones. Someone should get back to you pretty quickly.

Call:  Call us at 1-844-LFS-CALL (1-844-537-2255) If there is something that we might be able to help you with, dial us up, leave a message, and we will return your call as soon as possible.