Tag Archive for: childhood cancer

Guest Post by Dr. Melissa Hudson: How Has the Childhood Cancer Survivor Study Informed the Care of Children With Cancer?

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Progress in survival for childhood malignancies is tempered by the sequelae of the cancer and its treatment. Compelling evidence supports that childhood cancer survivors are a highly vulnerable group with a substantial risk of adverse health-related and quality-of-life outcomes resulting from their curative cancer therapy, broadly called “late effects”. Observational studies of survivor health outcomes […]

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Guest Post: “Coughing and Spluttering” — NCCS Co-Founder Susie Leigh Writes About Improving Care for Long-Term Survivors

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The sixth principle of the Imperatives states, “People with histories of cancer have the right to continued medical follow-up with basic standards of care that include the specific needs of long-term survivors.” NCCS has been on the forefront of incorporating care and survivorship care plans into cancer care. Providing her perspective of the history of […]

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NCCS Policy and Advocacy Manager Kelsey Nepote Attends and Presents at CancerCon: Takeaways and Steps for Moving Forward

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Over the weekend, I had the pleasure of attending and presenting at Stupid Cancer CancerCon in Denver, Colorado. Stupid Cancer is the largest US-based charity that comprehensively addresses young adult cancer through advocacy, research, support, outreach, awareness, mobile health, and social media. CancerCon is their yearly conference and social networking event for the young adult […]

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NCCS Session at CancerCon 2015 Presents Two Types of Advocacy

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This past weekend Kelsey Nepote of NCCS was honored to present a session on patient advocacy at the Stupid Cancer 2015 CancerCon event in Denver. As the largest oncology conference of its kind for the young adult cancer movement, CancerCon brought out hundreds of survivors at different points in the continuum of care, as well as caregivers and loved […]

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Exploring Access to Unapproved Therapies

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In a series entitled, “When Unapproved Drugs Are the Only Hope,” Meg Tirrell of CNBC takes an in-depth look into the complicated issue of patient access to drugs that have not yet been approved by the FDA, also known as “compassionate use” or expanded access programs (EAPs). She presents the story of 15-year-old Nathalie Traller, […]

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WCOE: Pediatric Cancer Survivorship Challenges and an ACA Progress Report

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A PBS Newshour segment, “Pediatric Cancer Survivors Face a Lifetime of Health Challenges,” discusses the late effects and potential secondary cancers that survivors of pediatric cancers face. The piece puts a human face on the challenges with its profiles of Laura Allaire, an adult survivor of pediatric cancer, and eleven-year-old Samantha Schwarz, who is being […]

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A New Addition to Our Policy Team: Kelsey Nepote’s First Assignment with Alliance for Childhood Cancer Action Days

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On Monday of last week it was with great pleasure that I started in my new position at NCCS as Policy and Advocacy Manager. My first assignment was to attend the Alliance for Childhood Cancer Action Days, which NCCS first reported on in June. This two-day event had significant meaning to me personally as my […]

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WCOE: Childhood Cancer Action Day, NCCS Provides Patient Perspective at IOM Workshop, and Pre-Hospice Program Report

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In a blog post on The Hill, Stephen Crowley urged Congress to “step up” funding for pediatric cancer research, as more than 250 advocates convened in Washington, D.C. for the Alliance for Childhood Cancer Action Day. NCCS is a member of the Alliance and was pleased to participate in and sponsor the advocacy effort. Crowley […]

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Take Action: The Alliance for Childhood Cancer “2014 Childhood Cancer Action Days”

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A diagnosis of childhood cancer is devastating and impacts families for many years. While we have seen progress in survival for some types of childhood cancer, it remains the number one cause of death by disease for children in our country. Moreover, of the nearly 380,000 survivors of childhood cancer now living in the U.S., […]

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NCCS Joins Alliance for Childhood Cancer in Submitting Comments to FDA

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NCCS joined the Alliance for Childhood Cancer in submitting comments to the Food and Drug Administration (FDA) following the January 2014 public workshop on complex issues in developing drug and biological products for rare diseases. The Alliance encouraged the FDA to consider the issues specific to pediatric cancers that may be different from other rare […]

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