Here is a list of links that I’m collecting that have been helpful to us. Hopefully, something here can help someone you know as well. I will continue to add to this list as I come across them. They are in order according to the frequency that I use them and all you have to do is click on the individual logo to go straight to the site. Please do not hesitate to send me links that you know, you love, you use, you think might be helpful to us or have heard about in passing. Whatever you got, bring it on and I promise to do the same.
Synovial Sarcoma Support Group is by far one of the most useful sites I’ve come across so far. This is a forum available for anyone to join who has questions about Synovial Sarcoma. Easy as that. This site is so important to SS peeps because with so little information out there about this type cancer access to others with the same diagnosis and that exchange of information can mean the difference between life and death for many.
I cannot say enough good things about this organization! Wonders and Worries helps “children whose parents are facing a serious or life-threatening illness.” One of my kiddos just attended one of there functions yesterday and meets with them on a regular basis. They give them coping skills and support. They offer opportunities for families to get together and experience something other than the illness that is affecting their lives so greatly. Love them!
Stupid Cancer, a 501(c)3 nonprofit organization, is the largest charity that comprehensively addresses young adult cancer through advocacy, research, support, outreach, awareness, mobile health and social media. Our innovative, award-winning and evidence-based programs and services serve as a global bullhorn to propel the young adult cancer movement forward. Very cool.
The mission of the Sarcoma Foundation of America (SFA) is to advocate for sarcoma patients by funding research and by increasing awareness about the disease. The organization raises money to privately fund grants for sarcoma researchers and conducts education and advocacy efforts on behalf of sarcoma patients.
Cancer Grace: Global Resource for Advancing Cancer Education – I haven’t used this site too much, but it seems to be pretty decent with the support it offers. A good mix of medical jargon and real people talk. Great site for forums and chats. Not much on Sarcomas, and rarely Synovial. Trent’s doctor, Dr. Goodgame, is a contributing member on this site.
Corporate Angel Network is the only charitable organization in the United States whose sole mission is to help cancer patients access the best possible treatment for their specific type of cancer by arranging free travel to treatment across the country using empty seats on corporate jets. This not only improves the patients’ chances of survival but at the same time, it reduces their emotional stress, physical discomfort and financial burden. Haven’t used them yet, but I’m glad they exist and I think we might need there services in the near future.
This is the National Cancer Institute’s website and it is as much superdry information about cancer that the government can jam onto one website. There is A LOT of information here, and it can be overwhelming.
As infamous as it’s founder might be, LIVESTRONG is a great organization that is doing a lot to overcome prior stigma and still offer quality to help to the cancer population. They offer many options in the way of mental health.