Facebook Support Group - HLH Family (Survivors & Angels)
In 2008, there were just a handful of HLH families we had met along the way, either through the Histiocytosis Association, or via Carepages, and Caring Bridge blogs. Facebook was also just getting its feet wet, and there weren't that many families using it at the time. That has all changed!
What started as a way to connect with friends and family, became a force to be reckoned with when I realized that we needed a support group just for HLH families! We wanted so desperately to find and connect with other survivors, and so the group was originally named "HLH Survivors". Unfortunately we learned that this disease is more often fatal, and there just weren't enough survivors. I also wanted to reach out to families who had lost their children to this horrible disease, who needed support and a way to connect with others ,so it was changed to reflect all warriors that have battled with HLH, and the HLH Family (Survivors & Angels) group was born. It is a safe place to talk, ask questions and lean on others who have walked down this path before and spread awareness on a global scale.
If you have a loved one diagnosed with HLH, then you have come to the right place and we invite you to request to join. Please be aware that since this is a private group, we ask that you make sure your Facebook settings allow us to private message you. Once you reply to our first email asking to share your story, we will then approve your request. Thank you for understanding our need to protect the privacy of our current members.
https://www.facebook.com/groups/HLHSurvivors
What started as a way to connect with friends and family, became a force to be reckoned with when I realized that we needed a support group just for HLH families! We wanted so desperately to find and connect with other survivors, and so the group was originally named "HLH Survivors". Unfortunately we learned that this disease is more often fatal, and there just weren't enough survivors. I also wanted to reach out to families who had lost their children to this horrible disease, who needed support and a way to connect with others ,so it was changed to reflect all warriors that have battled with HLH, and the HLH Family (Survivors & Angels) group was born. It is a safe place to talk, ask questions and lean on others who have walked down this path before and spread awareness on a global scale.
If you have a loved one diagnosed with HLH, then you have come to the right place and we invite you to request to join. Please be aware that since this is a private group, we ask that you make sure your Facebook settings allow us to private message you. Once you reply to our first email asking to share your story, we will then approve your request. Thank you for understanding our need to protect the privacy of our current members.
https://www.facebook.com/groups/HLHSurvivors