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 children
Go to this website

Children with cancer UK - Cancer Types | Rhabdomyosarcoma
Go to this website

Cancer Research UK - About RMS
Go to this website

Blog - Ziggy Zoo Radio - Steven’s Story
Go to this website

USA

American Cancer Society | About Rhabdomyosarcoma
Go to this website

American Society of Clinical Oncology (ASCO) | Rhabdomyosarcoma : Childhood | Introduction
Go to this website

ASCO | Rhabdomyosarcoma: Childhood statistics
Go to this website

The Liddy Shriver Sarcoma Initiative - Rhabdomyosarcoma
Go to this website

ASCO | Childhood Rhabdomyosarcoma: Latest research
Go to this website

Focus On Rhabdo | A community focussed on finding the cure for Rhabdomyosarcoma
Go to this website


FaceBook

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


Twitter

Canada
Sarcoma Cancer Foundation (Canada)
Read the Tweets here

UK
1000facesofrms
Read the Tweets here

Sarcoma UK, the bone and soft tissue cancer charity supporting patients and families
Read 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 Iowa
Read the Tweets here

Rhabdomyosarcoma (RMS)

RMS is a rare and aggressive form of soft tissue cancer.  RMS has particularly high incidence amongst infant and adolescent cancer patients.  There is evidence to suggest that sarcomas have a disproportionately high genetic basis, unlike cancers that are clearly very largely due to environmental factors, like lung cancer and skin cancers.

Disclaimer

‘1000 faces of RMS’ is a patient and research resource only and we offer no medical expertise or advice. Nor are we qualified to carry out any validation of the web sites that we link to.

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