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
- Welcome Recent Members!by ModSupport on February 18, 2025
Life With ADD / ADHD has been rather quiet for a long time but that doesn’t mean that there aren’t people here. It does mean that since the conversation has gone rather cold, it is difficult to connect with each other. So let me see if I can introduce the “recent” members of Life With ADD and I hope you might get to “meet” each other and help each other out a little. I’ve adjusted […]
- From Isolation to Connection: The Role of Community Supportby Ben_Munoz on December 19, 2024
As we approach the end of our year-end campaign, I wanted to share a powerful reminder of the impact your support makes. A Message from the Heart: We’ve just received an incredibly moving video from Jaz, one of our community members. In just a few moments, she captures the essence of why your support for Ben’s Friends is so crucial. Watch Jaz’s Powerful Message Now Jaz’s words remind us […]
- He’s not concentrating, againby Lee on October 6, 2024
Hi, we are new. I’m Mom to Twins and my one son has ASD and the other recently figured out ADHD. I feel terrible as we didn’t realise bad behaviour was symptoms and he’s back from boys town and doing same old things. Oddly on autism forum many have new dual diagnosis with both so it helped me confirm suspicions. I don’t like drugs and I’m thinking of trying l-theanine and maybe Gaba, if […]
- Looking for Your Stories!by ModSupport on January 9, 2024
@trust_level_0 Dear Life With ADD/ADHD Support Member, For over 10 years, the Ben’s Friends online rare patient communities, run & moderated by rare patients themselves, have been a source of support for many of us, living with rare diseases. But it’s not enough. We would like more people to know about this wonderful service. To that effect, we are planning a social media campaign that […]
- I’d love any adviceby Sarah on December 3, 2023
I’d love any advice on helping my 12 yo girl be less negatively reactive when she perceives rejection. She is being unkind and can focus on “revenge” and holding grudges. I feel so alone and full of shame, she has targeted children of friends of mine. She is on Intuniv (3 mg) and that helps with hyperactivity but I feel it’s not helping with impulse control when she has been hurt (even […]
- 7 Things to Look for When Choosing a Doctorby BF_Writer on May 9, 2023
Sascha Gallardo – November 1, 2022 When you are experiencing symptoms and know that something is wrong, do you settle with the first doctor you meet? Like many other patients, do you also think that doctors know everything so you should believe and simply follow everything they say? At Ben’s Friends, one of the things we always encourage our members to do is to advocate for their own health. […]
