CAC2 Childhood Cancer Community News Digest (January 22-28)

Assorted News from the Last Week:

Healing Hearts was created by grieving parents who needed a haven of love and comfort along with the hope of healing. Together, we support each other in creating a life worth living, for and with our children. Healing Hearts is for Osteosarcoma Bereaved families only and meets once a month on Wednesdays from 7- 8PM ET on the following dates:  January 31, February 28, March 27, and April 24.  For information and to register.

Webinar on the Individual Education Program (IEP) document, its development, the breakdown of each section and understand how the document will support a student, 6:00-8:30 pm ET, January 31.  For information and to register.

ACCELERATE Annual Conference 2024 on February 8 & 9 in Brussels. Learn about the most recent successes in paediatric oncology drug development worldwide, the latest regulatory updates in Europe and North America and more.  For information and to register.

Austin Hatcher Foundation Bubbles of Fun 5K, 10K, and 1-Mile Fun Run, February 10 at Tennessee Riverpark.  For information and to register.

Alliance for Childhood Cancer has announce that Action Days 2024 will take place in Washington, DC from February 13-14, 2024. Registration will open in mid-December.  Click for information.

NCI is hosting a webinar on February 26 at 2:00 ET featuring Dr. Michael Watkins, Brian Furner, and Dr. Sam Volchenboum from Data for the Common Good (D4CG) at the University of Chicago, home of the Pediatric Cancer Data Commons.  These experts will discuss pediatric cancer data standards in addition to D4CG’s contribution to the upcoming Childhood Cancer Clinical Data Commons. This CCDI resource will allow researchers to access harmonized and standardized participant-level demographics and clinical data collected from multiple studies.  For information and to register.

FDA’s Rare Disease Day will be on Friday, March 1, 2024, and registration is open for this virtual event. This year’s Rare Disease Day is dedicated to patients and health care professionals.

The United States Patent and Trademark Office (USPTO) is hosting a series of Public Engagement Partnership meetings with the first one on March 1 from 1:00-5:00 pm ET. USPTO wants to connect with individuals, advocacy groups, public interest focused nonprofits, and academics in order to exchange ideas, experiences, and insights related to patent policies and procedures.

56th Congress of the International Society of Paediatric Oncology (SIOP 2024), which will take place in Honolulu, Hawaii, USA | October 17-20, 2024.  Registration is open and anyone who registers before July 17, 2024 can take advantage of the discounted rates.

Past Recordings:

Mettle Health offers a free library of webinars that address different aspects of mental health for those coping with serious illness, disability, and end of life.  Learn more.

Take Action:

Help spread the word about the CAC2 Survivorship Toolkit using the CAC2 Survivorship Toolkit Promotions Kit. It contains a sample newsletter article, an email template, and a short introduction that can be used on a website.

The 2024 ASCO-Sponsored Patient Advocacy Booth will provide 50 complimentary exhibits to patient advocacy organizations at the ASCO Annual Meeting. The booth provides a venue where participants can display materials and where meeting attendees and patient advocates can meet, interact, and exchange information. Applications will be accepted between Monday, February 5 at 10:00 AM (ET) and Monday, February 12 at 5:00 PM (ET). Once the application period opens, the link to the application will be available on Cancer.Net.

The Childhood Cancer Data Initiative (CCDI) is seeking input to assist NCI in using electronic health record (EHR) data to accelerate progress in childhood cancer research. You are invited to respond to our latest Request for Information (RFI) to share your capabilities in automated EHR data entry and extraction. Submissions will be accepted until February 29, 2024.  Submit a response to share your tools, clinical workflows, and approaches for entering and extracting EHR data in a structured format. You may also respond with insights on how existing tools for data capturing, extraction, and transformation in adult cancer research can be used to support childhood and rare cancer research. Feel free to reach out to Subhashini Jagu with questions.


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