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

  • You might find a specialist for your rare disease in our Recommend a Doctor pages
    by BF_Writer on August 11, 2022

    Sascha Gallardo – November 1, 2021 Rare disease and chronic illness patients need to consult specialists or doctors who are very familiar with their condition. But especially in the case of rare patients, it’s not that easy to find someone who has many years of experience treating patients who have the same rare disease. Since Ben’s Friends is a network of patient communities, the majority […]

  • Preparing for Your Doctor’s Appointment
    by BF_Writer on August 10, 2022

    Sascha Gallardo – October 13, 2020 Getting the most out of your consultation with a doctor for a rare disease is already challenging. Now that we are also dealing with the Covid-19 pandemic, the challenge has been doubled. Considering the difficulty of getting an appointment and the risks associated with going to a hospital and being exposed to the virus, it is important to be well prepared […]

  • How to prepare for a surgery
    by BF_Writer on August 3, 2022

    Sascha Gallardo – May 11, 2021 After so many doctors appointments, you finally have a diagnosis. And as part of the treatment plan, you have to undergo a surgery. Although each type of surgery is certainly different from the other and would require some specific preparations, having a general idea of what needs to be done before the operation can help you better cope both with the surgery and […]

  • Some tips on how to improve your mental and emotional health
    by BF_Writer on July 29, 2022

    Sascha Gallardo – June 7, 2021 Having a rare or chronic illness can be a source of stress. The different symptoms alone, even the mild pain and fatigue, can already lower one’s mood. Add to these symptoms the financial concerns, the worry about the treatment process, and not being able to do some of the things you love. Mental and emotional health are essential to physical well-being. Stress […]

  • Ben’s Friends to launch Ben’s Connections soon
    by BF_Writer on July 27, 2022

    Sascha Gallardo – January 31, 2022 Ben’s Friends communities were created so that people affected by a rare or chronic illness can have a place to connect with others like them. Through the years, we have witnessed countless times how being able to get in touch with other rare disease patients or caregivers has helped our members. As many of them say, just knowing that there are people who […]

  • MakeMeSmile makes donating to Ben’s Friends through AmazonSmile much easier
    by BF_Writer on July 20, 2022

    Sascha Gallardo – February 23, 2022 Donating to Ben’s Friends through the AmazonSmile Charity Lists program is now easier with the help of MakeMeSmile, a free Chrome extension. Ben’s Friends is one of the charities participating in the AmazonSmile Charity Lists program. Everytime you purchase eligible items through AmazonSmile, you donate .5% of the price to your chosen charity, at no cost […]