Amyloidosis Support Network is an online patient support community that is powered by BensFriends.org, a network of patient support communities for rare diseases. 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.
Amyloidosis is a disease that occurs when amyloid proteins build up in your organs. Amyloid is an abnormal protein usually produced by cells in your bone marrow that can be deposited in any tissue or organ. Amyloidosis is rare, and the exact cause is often unknown. Treatments are available to help you manage your amyloidosis symptoms.
Learn more about Amyloidosis (and the various types of Amyloidosis) from Amyloidosis Patient Support Community.
This site 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. Amyloidosis Support Network 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.
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
- Become a Champion for Our Rare Disease Communityby ModSupport on November 19, 2024
Thank you for being an essential part of our Ben’s Friends community. Today, I want to invite you to take your support a step further by becoming a fundraiser for our “Friends Helping Friends” campaign. What does it mean to be a fundraiser? As a fundraiser, you create your own personal fundraising page and share it with your network. It’s […]
- Join Us in Strengthening Our Rare Disease Communityby Ben_Munoz on November 15, 2024
I hope this message finds you well. As a valued member of our Ben’s Friends community, I’m reaching out to share an important initiative that directly impacts the support we provide to individuals like you who are affected by rare diseases. Today, we’re launching our annual “Friends Helping Friends” campaign. Our goal is to raise $50,000 […]
- An Opportunity to Strengthen Our Rare Disease Communityby Ben_Munoz on November 13, 2024
I hope this message finds you well. As a valued Ben’s Friends community member, I wanted to reach out about an important initiative. In the coming days, we’ll be launching a campaign that gives us all a chance to strengthen and grow our rare disease support networks. This initiative isn’t just about raising funds; it’s about coming […]
- Symptoms: Common and Uncommon in Hereditary Amyloidosisby jessicanc on October 5, 2024
Hi everyone! I am a 45-year-old, African American female that has the V122i variant. So far, my symptoms have been predominantly neurological and musculoskeletal. For example, I was diagnosed with carpal tunnel syndrome, fibromyalgia, peripheral neuropathy (I do not have diabetes), arthritis in my hips and both knees, migraines, etc. I also have […]
- Looking for Your Storiesby ModSupport on January 9, 2024
Dear Amyloidosis 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 […]
