Advocacy Groups

The following groups are either focused on advocacy efforts or it ranks as a big part of their mission statement. 

 

The Children's Cause for Cancer Advocacy
CCCA is a 501 (c) 3 non-profit organization that works as a national catalyst to stimulate drug discovery and development for childhood cancers, to expand resources for research and treatment, and to address the needs and concerns of survivors. Consumers, survivors, families, and friends serve as independent voices on national issues of importance to our community. With advice from leading medical, scientific, and public policy experts, CCCA works with policymakers to advance basic and clinical research, health care, and services for childhood cancer patients, survivors and their families. We train grassroots leaders to encourage research on childhood cancer with the appropriate patient protections and to promote quality care for patients and survivors.

 

The Alliance for Childhood Cancer

The Alliance for Childhood Cancer represents more than twenty national patient advocacy groups and professional medical and scientific organizations. Patient advocates, many of whom are either cancer survivors themselves or are parents of children with cancer, are joined by oncology professionals and others representing the multidisciplinary spectrum of cancer care in a unique alliance that brings concerned parties together to advance the interests of children with cancer.

To provide a forum of national patient advocacy groups and medical and scientific organizations which meets regularly, shares ideas and concerns, and works collaboratively to advance research and policies to prevent cancer, and improve public education, and the diagnosis, treatment, supportive care and survivorship of children and adolescents with cancer.

 

Kids v Cancer

Nancy Goodman, Founder and Executive Director, established Kids v Cancer in honor of her son, Jacob Froman, who died from medulloblastoma at age 10.  Kids v Cancer promotes pediatric cancer research by identifying structural impediments at key junctures in the research process – new drugs, tissue and access to funding -- and developing strategies to address them.  Kids v Cancer has worked with key Members of Congress to help them author and introduce the Creating Hope Act, which provides market incentives to pharmaceutical companies to develop drugs for pediatric rare diseases.  Kids v Cancer is also launching a pediatric post mortem brain tumor tissue donation program linking clinicians, families and researchers.   Kids v Cancer has done research on the need for, and supports the establishment of, a Pediatric Cancer Study Section to strengthen the peer review process at the NCI and NIH.  Since its inception, Nancy has grown Kids v Cancer into a 501(c)(3) organization focused on changing the landscape of pediatric cancer research. Nancy can be contacted via email at nancygoodman@kidsvcancer.org.

 

St. Baldricks

In Jan. 2012 St. Baldrick's introduced Speak Up for Kids’ Cancer, the St. Baldrick’s Foundation advocacy action network. Together with our advocacy partners, we provide information, training, and resources to help you contact members of Congress to express your views on issues and raise awareness of childhood cancer.

Speak Up for Kid's Cancer gives a voice to the vast network of volunteers, donors, and participants involved in the work of the St. Baldrick's Foundation, the largest private funder of childhood cancer research grants, second only to the U.S. government. Speak Up for Kids' Cancer is a natural next step to the mission of the St. Baldrick's Foundation - funding the most promising research to find cures for childhood cancers and giving survivors long and healthy lives.

Join Speak Up for Kids' Cancer to get information about childhood cancer issues, alerts when your involvement is needed most, tips on communicating with your elected officials - and how you can become an advocate for kids with cancer!

 

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