The MyPART Team has had the opportunity to attend and speak at a variety of conferences and symposia. Read about our recent meetings below.

• June 26: The Hill Summit on the Future of Healthcare - Washington, DC. Karlyne Reilly, PhD spoke about MyPART during the panel discussion on rare diseases as a research priority. Watch the panel discussion here.
• July 24: New York Genome Center Very Rare Disease WorkshopNew York Genome Center Very Rare Disease Workshop - New York, NY. Karlyne Reilly, PhD was invited to speak by Nobel laureate Harold Varmus, MD about MyPART.
• July 29-31: NCI Childhood Cancer Data Initiative Symposium - Washington, DC. Brigitte Widemann, MD co-hosted a panel discussion entitled “Prioritizing Scientific and Clinical Research Data Needs for Therapeutic Progress,” and presented a short talk on MyPART. Watch recordings of the symposium here.
• August 2-4: International RASopathies Symposium - Baltimore, MD. Several MyPART team members attended the meeting and heard from researchers, clinicians, and patient advocates about Neurofibromatosis and several other RASopathies, a term referring to genetic conditions that result from mutations in the genes of the Ras-MAPK pathway.
• August 11-17: Special Love Camp Fantastic - Front Royal, VA. Several MyPART team members and Pediatric Oncology Branch staff participated in activities with campers during Camp Fantastic, a week-long camp for children and teenagers with cancer.
• September 23: The UC Berkeley Forum for Collaborative Research Workshop on Innovation in Trial Design - Washington, DC. Abby Sandler, PhD is invited to speak about MyPART to researchers, regulators, and advocates at this year’s workshop, entitled “Bringing Lessons from the Oncology Experience to Rare Diseases.”
• October 21-22: National Organization for Rare Disorders (NORD) Rare Diseases and Orphan Products Breakthrough Summit - Washington, DC. Several MyPART team members will attend the meeting and will sponsor a booth. Stop by our booth to learn more about MyPART.

September was named National Childhood Cancer Awareness Month in 2012 to raise awareness about childhood cancer. In the US, over 80,000 children and young adults (ages 0-39) are diagnosed with cancer each year, representing about 5% of all cancer diagnoses. Throughout the month of September, organizations across the country hold fundraising events and increase awareness of childhood cancer to promote the discovery of treatments and cures. Gold ribbons are used to symbolize the observance of National Childhood Cancer Awareness Month.

In the Center for Cancer Research Pediatric Oncology Branch, every day is Childhood Cancer Awareness Day. We are dedicated to providing support to our patients and families. We conduct high quality basic research and develop new treatment approaches through clinical trials.  Learn more about the Pediatric Oncology Branch’s commitment to childhood cancer research here.

In honor of Childhood Cancer Awareness Month, Dr. Karlyne Reilly was invited to write a blog for BMC. Read Dr. Reilly's blog entry on the importance of data sharing in pediatric cancer research here. 

The Sarcoma Alliance for Research through Collaboration (SARC) is a coalition of advocacy and research organizations that are dedicated to the development and support of sarcoma research initiatives. SARC was founded in 2003 by a small group of physicians who specialized in sarcoma, a type of cancer that forms in the connective tissues. They recognized that sharing intellectual and patient resources was more effective to conduct innovative sarcoma research. That value holds true today. SARC joins the MyPART Network as an advocacy partner and will help advance the MyPART mission to engage patients, families, physicians, researchers, and advocates in cancer research.

Next Advocacy Spotlight: The Chordoma Foundation

• GIST Clinic, September 26-27, 2019: The Pediatric Oncology Branch will host the annual Pediatric and Wildtype GIST Clinic for patients and families. Read more here.
• Symposium on Personal Control of Genomic Data for Research, September 26-27, 2019: The NCI welcomes advocates, researchers, policy leaders, and the public to this symposium to explore the impact of personal control of sharing genomic data for research, clinical care, and participant well-being and engagement. Learn more here.