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Patient Advocacy: Kids V Cancer In Partnership With World Orphan Drug Congress

October 14, 2014

We are constantly inspired by the work of rare disease advocacy groups. Their tireless work to fight rare disease has laid the foundation for the orphan drug industry to thrive. In recognition of this, the World Orphan Drug Congress is partnering with Kids v Cancer. Over the next year, the World Orphan Drug Congress will be working with Kids v Cancer to raise money and awareness of the need for drugs for rare disease cancers in children.

Kids v Cancer is a 501(c)(3) organization focusing on changing the landscape of pediatric cancer research. It is founded by Nancy Goodman (Executive Director) in honor of her son, Jacob Froman, who died from medulloblastoma (a rare form of brain cancer) at age 10.

Kids v Cancer promotes pediatric cancer research by identifying structural impediments at key junctures in the research process – new drugs, tissue donation, and access to funding – and developing strategies to address them. Since Kids v Cancer was founded in 2009, the organization :

•   Started an autopsy tissue donation program for pediatric brain cancers which has had significant impact on scientific discoveries

•   Raised the profile of pediatric cancer issues by having September declared National Childhood Cancer Awareness Month for each of the past 3 years

•   Worked with the FDA to pursue a new interpretation of the Best Pharmaceuticals for Children’s Act, a framework law governing pediatric cancer research, which will allow the FDA to accelerate the development of drugs potentially useful in treating pediatric cancer

•   Working to identify areas of potential convergence between FDA and foreign regulatory practices that can help strengthen pediatric drug development

•   Authoring and championing for the Creating Hope Act, Section 908 of the FDA Safety and Innovation Act (FDASIA), which created a market-based incentive to spur pediatric cancer drug development.  The Creating Hope Act went into effect on October 1st, and we are now working with the FDA, researchers and drug companies to ensure its full and effective implementation.

To find out more about Kids v Cancer, please visit their website.

To keep up to date with World Orphan Drug Congress, please visit their Facebook page.

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