Welcome Members!

Welcome to Synovial Sarcoma Survivors Patients Community!

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.

Synovial sarcoma (also known as: malignant synovioma) is a rare form of cancer which occurs primarily in the extremities of the arms or legs, often in close proximity to joint capsules and tendon sheaths. Primary synovial sarcomas are most common in the soft tissue near the large joints of the arm and leg but have been documented in most human tissues and organs, including the brain, prostate, and heart. As one of the soft tissue sarcomas, it is one of the rarest forms of soft tissue cancer.

Synovial Sarcoma Survivors 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. But Synovial Sarcoma Survivors 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

  • Heads up! Happening soon
    by ModSupport on October 19, 2021

    Heads up! Happening soon … One day soon, you will point your browser (or your DiscourseHub mobile app) in the direction of https://forum.synovialsarcomasurvivors.org/ and there you’ll be … in a completely different place! Well, not completely different: the page on which you’ll find yourself will be the new landing page for this community. From there, you will simply have to click on […]

  • Screen names — Ben’s Friends values your privacy
    by ModSupport on July 19, 2021

    Some of you may have noticed that your screen name now appears different. If you had your full name as your screen name, I changed it in order to better protect your privacy. If the shortened name is not to your liking, please private message me by clicking on the ModSupport icon and let me know what you would rather your name be, and I’ll change it. Sharon from ModSupport @trust_level_0 […]

  • How is a Ben’s Friends Community Different from Social Media and other Support Sites?
    by Bens_Friends on July 14, 2021

    Are you wondering how a Ben’s Friends community is different from social media and other support sites? The Ben’s Friends community for this rare disease is interested in only one thing: you. You as a person, and you and your struggles as a patient. We’re not interested in knowing your name or where you live. We won’t even allow you to use your real name when you register for one of our […]

  • Welcome to Bianc!
    by ModSupport on June 24, 2021

    Welcome @Bianc ! No one wants to find themselves diagnosed with a rare condition, but I’m glad that you found us here. I’m ModSupport, and my home base is actually a different community. But reading your profile I can see that you are at a major crossroads. Just know that we’re all here for you. Sharon from ModSupport@trust_level_0 1 post – 1 participant Read […]

  • 5/11/21 FDA gave IND approval for a BRD9 protein degrader
    by Rambam on June 12, 2021

    Since late 2018 we have been waiting for the development of this. Two companies, C4 therapeutics, and Foghorn Therapeutics have been developing treatments. Now Foghorn has received approval for a phase 1/2 IND trial for this BRD9 approval. This treatment is specifically developed for synovial sarcoma. Has any one enrolled in this clinical trial? Any information from doctors? Here is the […]

  • Recurrence after 4 years
    by Madita012 on May 15, 2021

    Hey everyone, i‘m new to this community and very happy to found this group since synovial sarcoma is so rare there are not many of them. I was diagnosed with ss in 2017, small tumor size was little more than 1cm close to elbow. Doctors thought it was benign and did an unplanned excision, turned out it was ss. After that i of chemo and radiation. Scans have been clear since 3 weeks ago. They […]