The following is a categorized list (continually growing) of links to online resources for those dealing with rhabdomyosarcoma. Although we Focus on Rhabdo, there is a category for all childhood and young adult cancer patients and families.

Online Support Groups

ACOR - Association of Cancer Online Resources - An Online Support Community for Rhabdomyosarcoma - Link to Join

From the website:
ACOR is a unique collection of online cancer communities designed to provide timely and accurate information in a supportive environment. It is a free lifeline for everyone affected by cancer & related disorders.

Click Here - ACCO Childhood Cancer on-line support groups

American Childhood Cancer Organization on-line community

Click Here - Smart Patients

Smart Patients is an online community where cancer patients and caregivers learn from each other about treatments, clinical trials, the latest science, and how it all fits into the context of their experience.

Click Here - Stupidcancer

Stupid Cancer is a non-profit organization that empowers young adults affected by cancer through innovative and award-winning programs and services

 

Sarcoma Centers

Listing of Sarcoma Centers Around the World - Sarcoma Centers and Specialists

From the Liddy Shriver Sarcoma Initiative:
The importance of Rhabdomyosarcoma being treated in a specialized sarcoma center cannot be stated strongly enough. These centers have the interdisciplinary teams and the needed experience working with these rare diseases. Always ask the question - "How many cases of Rhabdomyosarcoma have you treated?"

Click Here - Sarcoma Foundation of America

Sarcoma Information Links

 

Books, Publications and Other Resources

Childhood Cancer Guides
From the website:
Childhood Cancer Guides is a 501(c)(3)nonprofit that publishes award-winning books for
families of kids with cancer and survivors of childhood cancer. Our books are a mix of accurate medical information that is reviewed by renowned experts in pediatric oncology and true stories—practical, poignant, moving, funny—from hundreds of children with cancer, their siblings, and their parents. Our guides empower families with knowledge, practical suggestions, emotional support, and helpful resources.

Rhabdomyosarcoma - A booklet for parents. What you need to know. - Parent's Booklet

From the website:
This website has been created to enable parents and families whose children have been diagnosed with rhabdomyosarcoma to access a booklet about the condition. The booklet was written by Dianne Haley whose daughter Claire was diagnosed and treated for rhabdomyosarcoma in 2004/05 at the Royal Hospital for Sick Children in Edinburgh. The booklet was updated in 2012

The ESUN Guide for the Newly Diagnosed - The Liddy Shriver Sarcoma Initiative - ESUN Guide

From the website:
The Liddy Shriver Sarcoma Initiative provides educational resources and personal support for everyone dealing with sarcoma. Because we've been publishing articles written by sarcoma specialists and advocates for nearly 10 years, there is much information to be found at SarcomaHelp.org

Click Here - US National Library of Medicine

PubMed Health article on Rhabdomyosarcoma (somewhat technical)

Click Here - National Cancer Institute at the National Institutes of Health.

Article on Childhood Rhabdomyosarcoma - Patients Version

Click Here - National Cancer Institute at the National Institutes of Health.

Article on Childhood Rhabdomyosarcoma - Health Professional Version

Click Here - Ped-Onc Resource Center - Rhabdomyosarcoma

Resources and information for parents of children with cancer . . . by parents of children with cancer.

Click Here - Ped-Onc Resource Center - Signs of Childhood Cancer

Childhood cancer is rare. It is unlikely that your child will develop cancer. Still, as a parent, you need to be aware of the symptoms of childhood cancer.
(Scroll down to section on Rhabdo)

Click Here - CureSearch for Children's Cancer

Offers some basic guidance for patients, parents, siblings, extended family members, friends, neighbors, teachers and many others who care about a child with cancer.

Click Here - American Childhood Cancer Organization

Free books for Families of Children with Cancer

 

Financial Assistance

Click Here - First Hand Foundation

First Hand is a not-for-profit, 501(c)(3) organization that provides funding for individual children with health-related needs when insurance and other financial resources have been exhausted. Last year, through the generosity of people like you, more than $2 million was donated to the foundation. We turned around and spent all of it on improving the health status of children around the world

Click Here - Childhood Cancer Society

Childhood Cancer Society (CCS) began with the vision of a 16-year-old high school student who realized that having family around him while he was being evaluated for childhood leukemia created the support that he needed to cope. The Childhood Cancer Society provides funds for medical care, accommodations, and travel expenses to make it possible for families in need to obtain the necessary care for their children and to be with them when out of town hospitalization and treatment is required.

Click Here - Solving Kids' Cancer

Find, fund, and manage solutions to improve survivorship

Click Here - National GRACE Foundation

The National GRACE Foundation provides FREE college admissions and financial aid counseling to pediatric cancer patients and survivors.

Click Here - National Children's Cancer Society

We serve as a financial, emotional, and educational resource for families that can’t make ends meet when their child is diagnosed with cancer.

Click Here - Corporate Angel Network

Assistance with flights

Click Here - Angel Flight - South Central

Helping people in need of free air transportation for medical and humanitarian purposes. Serving Texas, Oklahoma, Louisiana, Arkansas and New Mexico.

 

Laboratories and Scientific Information Resources

Click Here - Keller Lab Blog

Unraveling rhabdomyosarcoma, osteosarcoma and medulloblastoma using engineering, biomedical, and translational research tools

Click Here - ClinicalTrials.gov - a Service of the US National Institutes of Health

Search results for Rhabdomyosarcoma from the NIH clinical trials database.

Click Here - Pediatric Preclinical Testing Program Compare Charts

Visual representation of tumor sensitivity based on the difference of individual tumor lines from the midpoint response (stable disease). Bars to the right of the median represent lines that are more sensitive (objective response), and to the left are tumor models that are less sensitive (progressive disease). Red bars indicate lines with a significant difference in EFS distribution between treatment and control groups, while blue bars indicate lines for which the EFS distributions were not significantly different.

 

Publications and Grant Information Links

Click Here - Labome.org

Publications, Grant Information and Links - Information on Alveolar Rhabdomyosarcoma

Click Here - Sarcoma Foundation of America

Sarcoma Information Links

 

Fundraising

Click Here - Live Like Bella

We fund Pediatric cancer research of novel, non toxic treatments for a cure. We provide in treatment assistance to families with recreational support. We assist families with the purchase of a headstone or urn in the tragic event their child passes away.

Click Here - Thumbs Up For Lane

Our mission is to support childhood cancer research through funding and advocacy while empowering families battling childhood cancer by providing education, financial assistance and a volunteer network.

Click Here - Battle 4 A Cure

Our mission is to make a difference in the lives of children fighting cancer and their families! Please join our battle against childhood cancer by getting involved today!

 

Resources for all childhood, adolescent and young adult cancers

Click Here - The Tiny Sparrow Foundation

We are a non-profit organization dedicated to providing lasting memories through the beautiful art of photography to the families within the United States of America with children who are facing life threatening illnesses.

Click Here - Monkey In My Chair

A beneficial program to help cancer patients stay connected to their classmates.

Click Here - Gabe's Chemo Duck Program

Gabe’s Chemo Duck Program™ is a unique educational program offered by Gabe’s My Heart, a nonprofit organization that supports children and families living with cancer.

Click Here - Peach's Neet Feet

Peach’s Neet Feet donates custom, hand-painted shoes to children living with disabilities and fighting serious illnesses.

Click Here - Chemo Angles

The Chemo Angels program offers support to those who find themselves in the most challenging situation of their lives – battling a cancer diagnosis and undergoing IV chemo treatment.

Click Here - SuperSibs!

Serving Siblings of Children With Cancer

Click Here - Keep Kids Connected

Keep Kids Connected was created to help keep kids connected to their family and friends while they are undergoing treatment for cancer or other life-threatening illnesses

Click Here - Wigs for Kids

Helping Children Look Themselves & Live Their Lives

Click Here - Sunshine Kids

The Sunshine Kids is a non-profit organization dedicated to children with cancer.

Click Here - Stories and Faces of Rhabdo Children

Links to Carebridge, Caringbridge, Carepage sites of children from around the world