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.

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.

Visitors should also be aware that our discussion forums and groups are publicly accessible and frequently searched by Google. Thus your speech here should be considered “public”. If you’re tempted to write something about another person that you wouldn’t say to their face, then we counsel you to think first. Speech can be consequential.

Amyloidosis Support Network is supported by unpaid volunteer moderators who validate and register new members and monitor ongoing discussions, photo postings and Blogs. Very often, moderators are themselves patients or family members of patients. Most of the time, moderators tend to keep a low profile, except in their roles as members of the community who may be well-informed about the state of medicine and research.

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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

  • Spotlight on Our Moderators
    by BF_Writer on September 7, 2022

    Ben Munoz – October 31, 2019 When we recently asked our moderators what they love about their role, we got a variety of reactions. Not surprising: each of our “mods” does their job in their own way! Some are very active in the conversation, and others take a more hands-off approach, intervening only when there might be a problem. We think […]

  • “Rare Diseases Doesn’t Have Us” – Foot and Float to Raise Awareness
    by BF_Writer on September 7, 2022

    Ben Munoz – August 15, 2019 We did It! Ten Ben’s Friends members traveled for more than 500 miles on foot and afloat to raise awareness and to raise money to start new Ben’s Friends Communities. This proves that although “WE HAVE RARE DISEASE -RARE DISEASE DOESN’T HAVE US”. We started the night before departing for Glacier National […]

  • When “Rather Rare” Becomes “Done Well”
    by BF_Writer on September 7, 2022

    Ben Munoz– November 1, 2019 I remember talking, not so long ago, with one of our AVM veterans. He has been battling this disease for 41 years now. When it was first discovered no one within 500 miles knew what it even was, let alone how to treat it. He says that it was a very scary time. Not only because of major surgery as an 8th grader but […]

  • Our New Ben’s Friends Classroom
    by BF_Writer on September 7, 2022

    Clasina Field – November 1, 2019 You must be wondering what Seenie has been doing these days. Well, I’ve been building our Google Classrooms and library where our Moderators and Interns will be able to learn the skills and tricks of the Moderator Trade. Right now, I’m about to stock our library with reading material and things like Slide […]

  • Spotlight on Our Board Member: John Stamler
    by BF_Writer on September 7, 2022

    Ben Munoz – November 9, 2019 John Stamler, Ben’s Friends’ treasurer and a rare disease survivor himself, had a conversation with Garry Turner in the Episode 81 of Value through Vulnerability podcast. John shared his inspiring work as a mentor to startups and his admiration for the entrepreneurs he works with who are so passionate about what […]