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.
- Shop With AmazonSmile This Summer And Help Change Patients Livesby Bens_Friends on June 13, 2022
Father’s Day. Graduations. All Summer Needs. Do some “feel-good” shopping and change a rare disease patient’s life today. Go to smile.amazon.com Click “Get started” Once signed in, you will be prompted to pick a charity- Ben’s Friends AmazonSmile Foundation will donate 0.5% of the purchase price of most items. Thank you for being a friend. Ben 1 post – 1 participant […]
- Let’s give our new members a warm welcome!by Sara_BFIntern on February 19, 2022
In the past week or so we’ve had 2 new members join this supportive community! If you click on their @tag or on their avatar you can read a bit of what they’ve included in their profiles. Dave (@Pluto) from Georgia learned that he has ADD relatively recently. I noticed that you were wondering if others with ADD/ADHD have found that people take them more seriously after beginning treatment. […]
- A Word about Covid Vaccinesby Bens_Friends on January 3, 2022
“Whether or not you choose to get vaccinated is a personal choice. Somehow, someway choice has become a political statement. Ben’s Friends Communities are for peer to peer support, not politics. While Covid is a concern of our membership, we are not social media. Anytime discussion veers to politics, religion, or off topic, that discussion will be moderate either moved to a private discussion […]
- Fwd: Holiday Help and Best Wishesby Bens_Friends on December 24, 2021
We know. It’s been another long, tiring, frustrating year. We hope you will have exactly the kind of holiday that you want and need. But we also know that the holiday season isn’t always the easiest time for our members. If you are feeling lonely, or you just need to touch base and talk, please remember that your Ben’s Friends community is there for you. Although your community may be very […]
- Holiday Help and Best Wishesby Bens_Friends on December 24, 2021
It’s been another long, tiring, frustrating year. And the holiday season isn’t always the easiest time for people. We hope you will have exactly the kind of holiday that you want and need. If you are feeling lonely, or you just need to touch base and talk, please remember that your Ben’s Friends community is there for you. Although your community may be very quiet, the Ben’s Friends team […]
- I am backby Sweetie on December 6, 2021
Hello! My name is Marsha and I have been a member here for quite some time, just been away for a long time. I am back now and needing much support. I have been doing okay up to this point. I am having trouble with controlling my behavior and acting more adult. I do have a boyfriend who is very supportive and patient. He helps me with staying with God and maturing, being more of an adult. I […]