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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

Upcoming Events

Check back here for upcoming events!

Past Events

Fifth Annual Olfactory Neuroblastoma (ONB) Patient Education Meeting - February 24, 2024

MyPART collaborator and NCI investigator, Dr. Nyall London, co-hosted this meeting for patients and families affected by ONB at the Hospital of the University of Pennsylvania. Experts on ONB from institutions across the US will gave talks and patients shared their stories. 

National Organization for Rare Disorders (NORD) Rare Summit - October 16-17, 2023

Several MyPART team members attended the 2023 NORD Rare Summit in person in Washington, DC and hosted an exhibit table in the Patient Advocacy Pavilion. 

The Pediatric and Young Adult Chordoma Clinic - October 27, 2022

The Chordoma Clinic was held in hybrid format and connected chordoma patients ages 39 years and younger with experts in chordoma from all over the country. Learn more about the first chordoma clinic, held in 2019, here.

The NIH Pediatric and Wild Type GIST Clinic - September 14-16, 2022

The GIST Clinic was held in hybrid format at the NIH Clinical Center in Bethesda, Maryland. Learn more about the clinic here.

Rare Disease Day at NIH Virtual Conference - February 28, 2022

Rare Disease Day at NIH is held each year to raise awareness about rare diseases and the impacts they have on patients and families and to highlight rare disease research. Read the agenda from this year's virtual event here.

National Organization for Rare Disorders (NORD) Rare Summit - Virtual Event, October 18-19, 2021

Several members of the MyPART team attended the 2021 NORD Rare Summit and hosted a virtual exhibit booth and provide information and resources about MyPART and the Natural History Study of Rare Solid Tumors.

September was Childhood Cancer Awareness Month

Read more about Childhood Cancer Awareness Month here.

Esophageal Cancer Action Network (ECAN) "A Path to Save Lives" Virtual Conference - September 10-12, 2021

Members of the MyPART team joined MyPART advocacy partners, ECAN, for their virtual conference, "A Path to Save Lives, A Virtual Collaborative Conference for All Stakeholders" to discuss the Natural History Study of Rare Solid Tumors.

Rare Disease Day at NIH - Virtual Event, March 1st, 2021

Every year, NIH hosts a day-long conference focused on rare disease research. This year, the event was held virtually and included a panel focused on rare cancers led by MyPART Executive Director, Dr. Abby Sandler. The panel includes leaders from our MyPART Advocacy PartnersVisit the website to learn more.

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, participated in a Facebook Watch Party led by the NCI on childhood cancer issues for Childhood Cancer Awareness Month. 

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

We hosted a virtual exhibit booth for the NORD Rare Summit. We provided educational materials, met virtually one-on-one with meeting participants, and MyPART co-leader, Dr. Karlyne Reilly, gave a talk. Learn more here.

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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