Welcome Members!

Welcome to Amyloidosis Support Network!

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.

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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

  • Looking for Your Stories
    by 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 […]

  • The Family’s Burden: Shedding Light on the Challenges of hATTR Amyloidosis
    by BF_Writer on December 7, 2023

    Sascha Gallardo – July 19, 2023 Hereditary Transthyretin (hATTR) Amyloidosis is an inherited condition caused by mutations in the transthyretin gene, leading to the accumulation of abnormal amyloid proteins in various organs. It is a rare and progressive disease that affects approximately 50,000 individuals worldwide. [1] The symptoms of hATTR […]

  • 📢 Calling mothers of children with rare diseases of all ages
    by ModSupport on August 12, 2023

    Ben’s Friends has launched a new community for moms raising children with rare diseases and chronic conditions and we are inviting you to join Warrior Moms Living with Rare Disease Warrior Moms Living with Rare Disease Warrior Moms fighting rare diseases together. Please share the […]

  • 2 bone biopsies in less than 3 months
    by Chain2512 on May 12, 2023

    Doctor wanted to run test to check if my amyloidosis is monoclonal or polyclonal from my first biopsy in March but the result was undetermined due to some unknown reason (more likely lab’s mistake due to long wait). Now he wants to send me for another biopsy less than 3 months apart. What are your opinions on that? Is that the only way to test […]

  • 7 Things to Look for When Choosing a Doctor
    by BF_Writer on May 10, 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 […]