You are not alone
On receiving a diagnosis of Rhabdomyosarcoma, it will be a disease you have probably never even heard of. It is rare, but that doesn’t mean that you are alone. There are plenty of organisations and support groups who are here ready to help you.
On this page we’ve listed some in order to make it easier for you to find them. In many large cities there will be local sarcoma support groups where you can meet other patients and families. Additionally some countries like the UK will have dedicated help lines staffed by professionals.
There are some great web sites too. From support groups, organisations and charities where you can find out more about RMS and receive support. Importantly there are also many social media groups that you can join where you can make contact with other patients and families.
If you are in the UK then we highly recommend that you visit the support page for ‘Sarcoma UK’, a great source of help and support.
We all have experiences and advice to share, so always remember that there are people here who know exactly what you are going through, they have been through or are currently going through the same. Just reach out if you need to.
This is where you can find support & information
Australia
Australian Government | Cancer Australia - About Children’s Cancer
Go to this website
Canada
Canadian Cancer Society | Rhabdomyosarcoma
Go to this website
Hong Kong
Children’s Cancer Foundation | Childhood Cancer Facts and Figures
Go to this website
India
Yoddhas, Indians Fighting Against Cancer
Go to this website
Ireland
Irish Sarcoma Group
Go to this website
New Zealand
Cancer Society | How we can help
Go to this website
UK
Sarcoma UK - The bone and soft tissue cancer charity
Go to this website
Macmillan Cancer Support - Rhabdomyosarcoma
Go to this website
Macmillan Cancer Support - Rhabdomyosarcoma in childrenGo to this website
Children with cancer UK - Cancer Types | RhabdomyosarcomaGo to this website
Cancer Research UK - About RMSGo to this website
Blog - Ziggy Zoo Radio - Steven’s StoryGo to this website
USA
American Cancer Society | About RhabdomyosarcomaGo to this website
American Society of Clinical Oncology (ASCO) | Rhabdomyosarcoma : Childhood | IntroductionGo to this website
ASCO | Rhabdomyosarcoma: Childhood statisticsGo to this website
The Liddy Shriver Sarcoma Initiative - RhabdomyosarcomaGo to this website
ASCO | Childhood Rhabdomyosarcoma: Latest researchGo to this website
Focus On Rhabdo | A community focussed on finding the cure for Rhabdomyosarcoma Go to this website
1000 Faces of RMS
Join this social network here
Sarcoma Action and Support Group (Ireland)
Join this social network here
Sarcoma Patients in the UK and Ireland
Join this social network here
Rhabdomyosarcoma support group (UK)
Join this social network here
Rhabdomyosarcoma info - fight it & inform others
Join this social network here
Pediatric rhabdomyosarcoma support group (USA)
Join this social network here
Focus on rhabdo (USA)
Join this social network here
Ziggy Zoo Radio
Join this social network here
Canada
Sarcoma Cancer Foundation (Canada)Read the Tweets here
UK
1000facesofrmsRead the Tweets here
Sarcoma UK, the bone and soft tissue cancer charity supporting patients and familiesRead the Tweets here
USA
Sarcoma Alliance (USA)Read the Tweets here
Sarcoma Foundation of America (USA)Read the Tweets here
Sarcoma Iowa (USA) a group of MDs who research Sarcoma in IowaRead the Tweets here