Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.
CaregiverSupportCommunity.org is an online support group for patients, friends and families affected by a rare disease. It is a welcoming, supportive community intended for close friends and family members who are caring for someone with a rare disease or condition.
The patients on any one of Ben’s Friends communities will have specific things in common because of their disease. Meanwhile, their caregivers may have things in common with other caregivers, independent of disease. CaregiverSupportCommunity.org is a community where caregivers can share experiences with, and support each other. Geographically, caregivers from a particular region may find it helpful to share and explore resources, supports and agencies available to them. There is strength in numbers: experienced caregivers can help those new to the role. And new caregivers can give those with a wealth of experience, a refreshed sense of purpose and commitment. Everyone — rare disease patients and caregivers — wins.
CaregiverSupportCommunity.org is a virtual community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.
Though we get occasional visits from medical doctors, the site is not routinely supported by medical professionals. Nobody here can diagnose you or tell you what your treatment choices “should” be. We might inform your choices by sharing individual experiences and information developed by study as lay people. But CaregiverSupport is not intended to replace the advice or treatment of licensed medical professionals. Readers should validate any information they take away from here, against the experience of a licensed medical doctor. Site owners and moderators are not legally responsible for the accuracy of information shared on the site.
We do not require you to identify yourself or exactly where you live: it is important to us that you should be anonymous here. That encourages openness. Nevertheless, visitors should also be aware that our discussion forums and groups are publicly accessible and frequently searched by Google and other search engines. That’s why your speech here should be considered “public”. If you’re tempted to write something about another person that you wouldn’t say to their face, then we counsel you to think first. Speech can be consequential.
CaregiverSupportCommunity.org is supported by unpaid volunteer moderators who validate and register new members and monitor ongoing discussions, photo postings and blogs. Very often, moderators are themselves patients or family members of patients. Most of the time, moderators tend to keep a low profile, except in their roles as members of the community who may be well-informed about the state of medicine and research.
Joining Ben’s Friends CaregiverSupportCommunity.org is easy: please check out the pointers on this Youtube video , then tap “Join” and “Sign Up”.