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FocusOnRhabdo.org

An Online Community of Researchers,
Clinicians, and Families Dedicated to
Making Rhabdomyosarcoma a Universally
Survivable Disease

What is Rhabdomyosarcoma?

Rhabdomyosarcoma (RMS or Rhabdo) is an aggressive and highly malignant form of cancer that forms in the soft tissues. It can occur anywhere in the body but is most generally found in the structures of the head and neck, the urogenital tract, and the arms or legs but can also form in parts of the body without muscle, such as the bile duct, the prostate, or along the meninges, the membranes that line the skull and vertebral canal.  While generally thought of as a childhood disease—a majority of cases are found in children and young adults—it is not uncommon to find in adult patients as well. Rhabdomyosarcoma is considered a rare cancer, although it is the most common soft-tissue sarcoma in children and adolescents under the age of 20—with roughly 350 cases diagnosed in the US each year. For this reason, it is unusual for any pediatrician or primary care physician to see a patient with this disease.

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New to the Rhabdo Community?

If you or a loved one just received a diagnosis of rhabdomyosarcoma, you’ve come to the right place.

Lorem Ipsum is simply dummy text of the printing and typesetting industry. Lorem Ipsum has been the industry’s standard dummy text ever since the 1500s, when an unknown printer took a galley of type and scrambled it to make a type specimen book. It has survived not only five centuries, but also the leap into electronic typesetting, remaining essentially unchanged. It was popularised in the 1960s with the release of Letraset sheets containing Lorem Ipsum passages, and more recently with desktop publishing software like Aldus PageMaker including versions of Lorem Ipsum.

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Link to NIH Clinical Trial Database for Rhabdomyosarcoma

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Resources for Rhabdo Patients and Familes

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Focus On Rhabdo Announcements

New clinical trial (not yet open) to watch

Insulin-like Growth Factor 1 Receptor (IGF-1R) Antibody AMG479 (Ganitumab) in Combination With the Src Family Kinase (SFK) Inhibitor Dasatinib in People With Embryonal and Alveolar Rhabdomyosarcoma See Original Notice Here ClinicalTrials.gov Identifier: NCT03041701...

Of Interest to Our Community

The war against childhood cancer: Who’s winning?

[COMMENT: One point made here is that there hasn't been much progress with the more rare childhood cancers because they are rare.  We need to change the paradigm for clinical trials for rare cancers and reduce the number of participants needed to begin the study. This...

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New understanding of why cancer cells move

PUBLIC RELEASE: 27-DEC-2017 New understanding of why cancer cells move UNIVERSITY OF HAWAII CANCER CENTER | Released 12/27/17 | Eurekalert.org | See Original Article Here IMAGE: JOE W. RAMOS, DEPUTY DIRECTOR OF THE UH CANCER CENTER. CREDIT: UNIVERSITY OF HAWAII CANCER...

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A New Way to “See” Cancer

A New Way to "See" Cancer Combining near-infrared light with ultrasound could let doctors image tumors with unprecedented accuracy By Quing Zhu | Scientific American | December 22, 2017 | See Original Article Here   An ultrasound of breast cancer, which only shows the...

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Advocacy Initiative Updates

The war against childhood cancer: Who’s winning?

[COMMENT: One point made here is that there hasn't been much progress with the more rare childhood cancers because they are rare.  We need to change the paradigm for clinical trials for rare cancers and reduce the number of participants needed to begin the study. This...

From the Lab Bench

The war against childhood cancer: Who’s winning?

[COMMENT: One point made here is that there hasn't been much progress with the more rare childhood cancers because they are rare.  We need to change the paradigm for clinical trials for rare cancers and reduce the number of participants needed to begin the study. This...

New understanding of why cancer cells move

PUBLIC RELEASE: 27-DEC-2017 New understanding of why cancer cells move UNIVERSITY OF HAWAII CANCER CENTER | Released 12/27/17 | Eurekalert.org | See Original Article Here IMAGE: JOE W. RAMOS, DEPUTY DIRECTOR OF THE UH CANCER CENTER. CREDIT: UNIVERSITY OF HAWAII CANCER...

A New Way to “See” Cancer

A New Way to "See" Cancer Combining near-infrared light with ultrasound could let doctors image tumors with unprecedented accuracy By Quing Zhu | Scientific American | December 22, 2017 | See Original Article Here   An ultrasound of breast cancer, which only shows the...

Foundations and Organizations that Support Rhabdo Families and Research

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