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If your family has been affected by Synovial Sarcoma, consider Synovial Sarcoma Survivors Network your second home.

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Ben's Friends Fundraiser

Hi Past & Present Ben's Friends Supporters! 
We really need your help. Our annual Ben's Friends fundraiser is way below goal. So far we are at $14k with many generous donations. But at the very least we need to be at $25k, and ideally at $35k or above. 
We're probably the most efficient non profit in the world, helping 125,000 patients per month with a budget of $3k per month. But even we can't survive on $14k. 

Please donate at our super easy Donation Page at Ben's Friends . A $5 donation will make a big donation. Everything is tax deductible!

We realize most members aren't in a position to donate. Those members can help by spreading the word about the fundraiser on the communities and on Facebook. 

We need your help to keep Ben's Friends alive and going strong!
We really need your help! Please donate, even if it's $5, that will really help.

Thanks!
Scott
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WHAT IS SYNOVIAL SARCOMA?

Synovial sarcoma is a malignant tumor of the soft tissues, usually around joints.

Under the microscope the tumor resembles synovial tissue (the lining tissue of joints). Synovial tissue is found around the tendons (bands of fiber that connect muscle to bone), and can form bursa (fluid filled cushioning pouches or sacs found in spaces between tendons, ligaments and bones) found in the area of joints.

This condition tends to occur in adolescents and young adults and affects more males than females. The most common location of origin is the thigh near the knee, but synovial sarcoma can also occur near other joints, mainly in the arms and legs.

Despite its name, it seldom arises within a joint.

Forum

Clinical Trails

Started by Aperez in General. Last reply by Philoanon 1 hour ago. 24 Replies

My run with Votrient has ended after 8 months. My tumors have progressed in my lungs. Visiting Sloan for trials and wonder if anyone is aware of any trails (other than the NYESO trail)? I don't…Continue

cannabis oil

Started by Kelly in General. Last reply by Philoanon 19 hours ago. 7 Replies

Has anyone used cannabis oil as a treatment?

Your experiences with pain?

Started by Katie in General. Last reply by Philoanon 19 hours ago. 15 Replies

I haven't formally introduced myself yet so here goes...My name is Katie, I'm from the UK, I'm 27 years old and a few weeks ago I was diagnosed. I have a deep tumour greater than 5cm (TNM staging -…Continue

Synovial Sarcoma

Started by Evan in General. Last reply by Elodie Espesset yesterday. 10 Replies

I was wondering if anyone has tried vitamin c therapy intravenously?Continue

Ben's Friends Member Survey

Thank you for taking time to participate in our survey.  We are so grateful that more than 1000 of you responded! We are now working on analyzing the data. We'll let you know of the survey results soon.

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Be inspired by the helpful tips and amazing stories of patients with rare diseases. Get the e-book "We're in This Together: Stories & Tips from Patients with Rare Diseases" HERE.

Welcome To SynovialSarcomaSurvivors.org

If you or a loved one is affected by Synovial Sarcoma, this site is for you. Here you will find support, information, and most importantly a place to connect!

What you can do on Synovial Sarcoma Survivors:

  • Share your story on "My Page" & personalize it to reflect you.
  • Upload pictures & videos easily.
  • Start a new discussion on "Forum" or contribute to existing discussions.
  • Welcome new members with a comment on their page.

* We only offer peer-to-peer support (patients, family and friends). Unless a person states otherwise, we are not doctors.

This site is brought to you by Ben's Friends Patient Communities.

Latest Activity

Philoanon replied to Aperez's discussion Clinical Trails
"Hi, I know what you mean Aperez. In Scotland after the standard (funded chemo) max dose of radio…"
1 hour ago
Ernesto Fonseca and Kelly are now friends
1 hour ago

Moderator
Elodie Espesset replied to Aperez's discussion Clinical Trails
"Unfortunately, this is a big lottery but you have no choice but to play the game :-( Good luck!!!"
3 hours ago

Moderator
Elodie Espesset left a comment for Bklyn
"Welcome Bklyn! If you have any question, please do not hesitate to start a discussion by clicking…"
3 hours ago
Bklyn is now a member of Synovial Sarcoma - Online Support Group
3 hours ago

Moderator
dancermom updated their profile
9 hours ago
Aperez replied to Aperez's discussion Clinical Trails
"My biggest reservation with this trial is it's a phase 1. I signed a consent form but I'm…"
16 hours ago
Philoanon replied to Kelly's discussion cannabis oil
"Kelly, (and others interested) What questions do you have? I have some experience here, and if I…"
19 hours ago

Top Content 

1 Clinical Trails

Clinical Trails

Posted by Aperez on January 16, 2015

2 Proton Therapy?

Proton Therapy?

Posted by Meg on January 2, 2015

3 Yondelis

Yondelis

Posted by jsinder on January 7, 2015

4 cannabis oil

cannabis oil

Posted by Kelly on November 6, 2014

5 Argentina's consultation

Argentina's consultation

Posted by luz on January 4, 2015

 
 
 

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Are You in Crisis?

First take a deep breath, then call the National Suicide Prevention Hotline immediately.  1-800-273-TALK for members in the United States.

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Blog Posts

Prescriptions Assistance

Posted by Elodie Espesset on January 23, 2015 at 10:56am 0 Comments

Managed Rx Plans Inc. is a private pharmacy that accepts most insurance

including prescription drug programs as full payment towards prescriptions.

Patient must have insurance with a 70% or better co-pay. Shipping is free.

Call…

Continue

Athletic Teams Supporting Children with Life Threatening or Chronic Diseases

Posted by Elodie Espesset on January 19, 2015 at 9:27am 0 Comments

There is an organization that matches young patients with local college athletic teams:

http://www.goteamimpact.org/what-we-do/

If you have experience with them, please add…

Continue

Resources for Adolescents and Young adults

Posted by Elodie Espesset on January 16, 2015 at 10:23am 0 Comments

Financial support:

http://collegiatecancer.org/

The FLY Foundation will provide support to young adults…

Continue

LSSI Bulletin January 2015 – News for the Sarcoma Community

Posted by Elodie Espesset on January 15, 2015 at 9:45am 0 Comments

Announcing a New Sarcoma Research Grants Program by Bruce Shriver, PhD and Beverly Shriver, RN - http://bit.ly/17J2UkQ  

 

$100K Grant Awarded for Ewing's Sarcoma Research - A…

Continue

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