CAC2 Childhood Cancer Community News Digest (December 19-January 1)

January 2, 2023 Community News, News Digest

Assorted News from the Last Two Weeks:

The Centers for Disease Control and Prevention updated its cancer cluster guidelines.

“About 85% of children with cancer survive, but the next question is how they can survive healthy in adult life. Even those children who are quite healthy in childhood can develop long-term cardiac-toxicity disorder, including stroke, decades after their cancer.”  The issue is that pediatric cancer patients often recover quickly after treatment and seem just fine, and the toxicity issues do not reveal themselves until decades later.

The Comprehensive Cancer Survivorship Act was introduced to address care planning, transition, navigation, reimbursement, quality, and so much more. It aims to address gaps in survivorship care and develop desperately needed standards to improve the overall patient-centered quality of care and navigation needs of the nation’s 18 million cancer survivors of all ages.

Both the US Senate and House of Representatives unanimously passed the reauthorization of the Childhood Cancer STAR Act for another five years! In addition, the final omnibus appropriations package contained all of the hoped for funding!

A clinical trial led by the National Cancer Institute (NCI) has resulted in the first approval of a treatment for advanced alveolar soft part sarcoma (ASPS) for ages two and older.

Upcoming Webinars, Online Opportunities, and Meetings:

Join the ACCELERATE group On February 9 & 10 for this hybrid meeting.  In person attendees will meet in a completely new venue in Brussels to discuss, network, share knowledge and engage with our international, multi-stakeholder community on the latest in paediatric oncology drug development.  Click here for more information.

On February 19-22, 2023, the San Antonio Pediatric Cancer Symposium (SAPCS), hosted by the Greehey Children’s Cancer Research Institute – UT Health San Antonio, in conjunction with the Mays Cancer Center, will bring together some of the most respected childhood cancer researchers from academia and industry to the Marriott Riverwalk; to discuss how today’s advances in basic and translational sciences are impacting tomorrow’s therapies and diagnoses.  Click here for more information.

SAVE THE DATE!  The Alliance for Childhood Cancer is excited to announce that Action Days 2023 will return back to Washington, D.C. from April 24-25, 2023. Registration will open in early 2023.

Recordings of Recent Past Events:

Take Action:

The CAC2 Survivorship Team is building a comprehensive six category Childhood Cancer SurvivorshipToolkit to provide info & resources to help survivors/families.  If you have explored resources for your family, or to assist others, THEY NEED YOUR HELP!  Please add your resources using the appropriate form below:

●      Educational Guidance and Planning https://www.surveymonkey.com/r/GF9NX6M
●      Insurance and Financial Health https://www.surveymonkey.com/r/F96L5CJ
●      Managing Physical Health and Late Effects https://www.surveymonkey.com/r/FN2J8WZ
●      Psychosocial/Emotional Health/Wellbeing https://www.surveymonkey.com/r/FNDGC9K
●      Transitioning to Adulthood https://www.surveymonkey.com/r/F9MBQWZ
●      Wellness/Healthy Behaviors https://www.surveymonkey.com/r/FNVPH8Z

 

The Communication Team at the Childhood Cancer Data Initiative is hoping to identify personal stories from the patient/caregiver/survivor perspective to feature in their monthly newsletter debuting next month.  Each month the CCDI progress update will include three stories of people in the childhood cancer community that either relate directly to childhood cancer data sharing or allow them to highlight a need that CCDI would help meet.  Please email Vickie at of you have a story or would like more information.

 

Applications are now open for the brand new ALADDIN educational programme! Are you a patient advocate interested in paediatric drug development? Apply today and train in regulatory science for childhood cancer drug development:https://aladdin-education.eu/training-course/

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