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MyPART - My Pediatric and Adult Rare Tumor Network
 

MyPART Upcoming Events

MyPART team members are participating in upcoming meetings to talk about our programs. If you are interested in learning more about MyPART you can find us at the following events.

For more information about our upcoming events, email NCICCRRareTumors@mail.nih.gov.

Upcoming Events

Facebook Watch Party with Dr. Lori Wiener, September 23, 2020

Dr. Lori Wiener, head of the NCI Pediatric Oncology Branch Psychosocial Support and Research Program and MyPART Team member, will participate in a Facebook Watch Party led by the NCI on childhood cancer issues for Childhood Cancer Awareness Month. Dr. Wiener will answer questions from the audience live. The event will be held live on the NCI Facebook page on September 23rd, 2020 at 3:00 pm EST.  

NORD Rare Summit - Virtual Event, October 8-9, 2020

We will host a virtual exhibit booth for the NORD Rare Summit. We will provide educational materials and have the opportunity to meet virtually one-on-one with meeting participants. MyPART co-leader, Dr. Karlyne Reilly, will speak at the virtual event. Learn more here.

 

Past Events

Congressional Networking Reception, February 11, 2020

Several members of MyPART attended the annual Congressional Networking Reception in Washington, DC to honor The Children's Inn and support research and programs for improving child health.

Rare Disease Day at NIH, February 28, 2020

Rare Disease Day is observed globally to raise awareness of rare diseases for policy makers and the public. Each year, the NIH Clinical Center and NCATS sponsor Rare Disease Day at NIH. This year, MyPART staff helped coordinate a clinical trials resource booth. 

Olfactory Neuroblastoma Patient Education Meeting, February 29, 2020

The NIH held its first Patient Education Meeting for Olfactory Neuroblastoma (Esthesioneuroblastoma) on Saturday February 29th from 9am to 1pm in the NIH Clinical Center in Bethesda, MD. The meeting was directed by Dr. Nyall London, Dr. Gary Gallia, and Dr. Murray Ramanathan and sponsored by the National Institute on Deafness and other Communication Disorders (NIDCD)

MyPART Team Retreat, January 29, 2020

The MyPART Team held its first annual retreat on the NIH campus in Bethesda, MD. The morning session included talks and a poster session. The afternoon session facilitated break out sessions for MyPART team members.

National Organization for Rare Disorders (NORD) Rare Summit, October 21-22, 2019

Several members of the MyPART team attended the NORD Rare Summit in Washington, DC and hosted an exhibit booth in the Advocacy Pavilion. 

American Society for Clinical Oncology Annual Meeting, May 31, 2019

Several members of the MyPART team attended the American Society for Clinical Oncology Annual Meeting in Chicago, IL from May 31 through June 4, 2019.

American Association for Cancer Research Annual Meeting, April 1, 2019

MyPART co-organized an NCI, NIH sponsored panel at the American Association for Cancer Research Annual Meeting in Atlanta, GA. The session was titled “New NCI Collaborative Initiatives on Rare Tumors and RASopathies.” We presented an overview of MyPART and the research we are doing to find treatments for rare cancers.

Rare Disease Day at NIH, February 28, 2019

Members of the MyPART team “showed our stripes” on Rare Disease Day at NIH in Bethesda, MD. Rare Disease Day is a worldwide event on Feb 28, 2019 for people with rare diseases. MyPART co-organized a panel to discuss “Success Factors for Rare Cancer Research – Building Strong Foundations.” 

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