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

  • Ben’s Friends Communities Can Help Advance Medical Treatments
    by BF_Writer on December 8, 2022

    Sascha Gallardo – June 10, 2020 The anonymity of members in Ben’s Friends communities allows them to freely share their experiences, doubts and worries. They safely find comfort from fellow patients without revealing their identity. Researchers, at the same time, can gain insights from our communities that could leapfrog the discovery of long-awaited treatments as well as making improvements […]

  • Ben’s Friends Communities Provide Warmth and Friendship during COVID-19 Pandemic
    by BF_Writer on November 24, 2022

    Sascha Gallardo – May 21, 2020 COVID-19 forced millions of people worldwide to stay at home. Governments imposed measures such as physical distancing, stay-at-home, and total lockdown to contain the disease as it spread from China to the rest of the world. While these steps aimed to keep people safe from the virus, the isolation has also caused mental and emotional effects on everyone. No one […]

  • Spotlight on Our ModSupport Member: Sharon a.k.a Stoney
    by BF_Writer on November 24, 2022

    Sascha Gallardo – June 4, 2020 Providing a safe and supportive community for patients is our top priority at Ben’s Friends. We want members to freely ask questions, share opinions, and express emotions without having to worry about inappropriate reactions from others. And this has always been possible because of members who voluntarily devote time to ensure that this goal is always met. We […]

  • Spotlight: Ben’s Friends former Intern, Dr. Melissa Jones, MD
    by BF_Writer on November 17, 2022

    Sascha Gallardo – June 15, 2020 The patients who visit our sites have tons of questions on their mind related to their symptoms, which clinic to visit, the medications they are taking, and the treatment procedures they will undergo. They want a space to find answers as well as comfort from people who truly care. The Ben’s Friends team, on the other hand, interacts with the members on a daily […]

  • Ben’s Friends inks partnership with ClozTalk
    by BF_Writer on November 17, 2022

    Sascha Gallardo – July 1, 2020 We’re excited to announce that Ben’s Friends has partnered with ClozTalk, a social impact company that helps charities raise people’s awareness of their mission. ClozTalk now designs apparel like t-shirts, hoodies, and jackets with the logo of Ben’s Friends. As more people get to know our organization through the sale of these items, we can reach more […]

  • Rare Disease Diagnosis: Difficulties and Advancements
    by BF_Writer on November 3, 2022

    Sascha Gallardo – August 31, 2020 Delays in getting an accurate diagnosis for a rare disease is very common. Patients would visit a physician, present their symptoms, and then they would be told there is nothing wrong with them. They’d visit another one, would be referred to a specialist, and then get some tests done only to go back to square one after a few months. The same process would be […]