Welcome Members!

Welcome to our Caregiver Support Community!

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. 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 CaregiverSupportCommunity.org 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.

Read More…

 

 

How is Ben’s Friends Different from Social Media and Other Support Sites?

 

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.

We’re interested in you as a person, and in your struggles as a rare disease patient.  But we don’t want to know your name or where you live. We won’t even allow you to use your real name when you register for one of our communities. Because when it comes to medical things, anonymity is important in our googly universe.  Your information is never shared, and your activity never tracked by adware.

When Ben’s Friends asks for the country and region you live in, that’s in case your fellow members can recommend local resources and help, and so everyone knows what kind of medical system there is where you live.  That’s important when it comes to giving and getting support. Because we are all about support, and we’re all in this together.. 

Ben’s Friends: Safe and Supportive. 
And anonymous to keep it that way.

 

Why create an account?

 

Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:

Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.

Viewing other members’ profiles. Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.  

Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.

Click here to create an account and join.

 

Latest Discussions

  • Let’s welcome our new members!
    by Sara_BFIntern on November 22, 2021

    Over the past few days we’ve had a handful of new members join this supportive community. How great is that? If you click on their @tag or on their avatar you can read a bit of what they’ve included in their profiles. @Patricia cares for her son who lives with PSA. I’m sorry to hear how much your son is suffering. How are you both doing now? Natalie’s screen name is @NAWAS and she is […]

  • The Roller Coaster
    by EDsGirl on November 20, 2021

    So, I am on the uphill climb of this roller coaster once again. My BH has been having some serious setbacks lately. Her tremor is back along with her stutter, aphasia, balance and confusion. An EEG needs to be ran and yet another MRI/MRA (like she hasn’t had enough of them)! I still get anxious and worried every time. How do I stop myself from getting like this EVERY SINGLE TIME? […]

  • Community Guidelines
    by ModSupport on November 10, 2021

    This is a Civilized Place for Public Discussion Please treat this discussion forum with the same respect you would a public park. We, too, are a shared community resource — a place to share skills, knowledge and interests through ongoing conversation. This site is a virtual community intended to be a safe place for patients and family members as young as age 13, to visit for information, […]

  • How is Ben’s Friends Different from Social Media and Other Support Sites?
    by ModSupport on November 10, 2021

    Many people wonder how a Ben’s Friends community is different from social media and other support sites. The Ben’s Friends community for this rare disease is interested in only one thing: you. You as a person, and in your struggles as a patient. We’re not interested in knowing your name or where you live. We won’t even allow you to use your real name when you register for one of our […]

  • About the Guidelines, Privacy, and Terms of Service category
    by ModSupport on November 10, 2021

    What is different about a Ben’s Friend’s Patient Community. Our Privacy Statement and Terms of Use 1 post – 1 participant Read full topic

  • Caregiver for an independent person
    by EDsGirl on July 31, 2021

    We all know that caregiving can be exhausting, stressful, difficult, etc. That is what most people believe it is all the time and for some that’s true, however, for those of us caring for an independent person (stubborn, bull headed, insert adjective here), it can be all of those things compounded. For me, it is all that and so much more! You see the one i care for is a SURVIVOR in every […]