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VERY Rare Cancer Workshop

7:30 AM — 3:00 PM

July 24, 2019

See New York Genome Center’s lecture series, events and archives VIEW FULL CALENDAR


Very Rare Cancer Workshop

July 24, 2019 | 7:30 AM – 3:00 PM




Very Rare Cancer Workshop aims to define very rare cancers, establish city-wide cohorts and discuss how NYC institutions can collaboratively benefit patients. Long term, this consortium plans to create a very rare tumor registry, perform CLIA WGS, RNAseq, Hyperion CyTOF with immune panel (among other tests), arrange NYC-wide molecular tumor boards and ultimately apply for NIH/foundation funding.


7:30am – 8:00am Breakfast and Registration


8:00am – 8:30am Welcome and Opening Remarks

Tom Maniatis, NYGC

Harold Varmus, NYGC, Weill Cornell Medicine


8:30am – 9:00am Introduction to the Initiative

Olivier Elemento, Weill Cornell Medicine

Brian Robinson, Weill Cornell Medicine

Neerav Shukla, Memorial Sloan Kettering Cancer Center


9:00am – 9:25am Chordoma Foundation: Accelerating the Search for a Cure

Josh Sommer and Joan Levy, Chordoma Foundation


9:25am – 9:50am Empowering Patients to Direct Cancer Research will Lead to Faster Progress

David Sandak, Rare Cancer Research Foundation /


9:50am – 10:15am MyPART: A Patient Engagement Network for Rare Pediatric and Young Adult Solid Tumors

Karlyne M. Reilly, National Cancer Institute Rare Tumor Initiative


10:15am – 10:30am Coffee Break


10:30am – 12:00pm Research Approach to Very Rare Cancer


It All Starts with the Family: A Human Genetics Approach to Rare Tumors

William Foulkes, McGill University


A Patient – Clinician – Researcher Partnership for the Development of Diagnostics and Therapeutics for a Rare Cancer, Fibrolamellar Hepatocellular Carcinoma

Sanford Simon, The Rockefeller University


Rare x Rare: Sarcoma Subsets & Other Rare Malignancies in Adults

Bob Maki, Northwell Health


Partnering with Patients to Develop Rare Cancer Models for Cancer Dependency Map

Moony Tseng, Broad Institute


Studies of Very Rare Pediatric Cancers through Global Collaborations

Ching Lau, The Jackson Laboratory


12:00pm – 1:30pm Breakout Sessions (Lunch Provided)


1:30pm – 2:00pm Presentations by Breakout Discussion Leaders


2:00pm – 3:00pm Next Steps and Concluding Remarks



    The New York Genome Center’s Evening Talks events feature distinguished experts from around the world sharing genomic insights and research. They are intended to showcase and explain high science to the non-scientific community. Speakers present the latest research findings and explain its implication for helping improve clinical care for a wide array of serious diseases. The lecture is followed by a lively question-and-answer session and a post-event reception of hors d’oeuvres and cocktails. These popular free public events are held in the Center’s state-of-the-art ground-floor auditorium starting at 6:30 pm. The Evening Talks Series is sponsored by The New York Community Trust – Pyewacket Fund.

  • New York Cancer Genomics Research Network
    To advance collaborative efforts on cancer genomics, the New York Genome Center (NYGC) hosts meetings on the first Tuesday of every month to bring together leading cancer researchers, clinicians and postdocs from the NYGC’s Institutional Founding Members and other key academic institutions. The organizers include Drs. Harold Varmus (Weill Cornell Medicine & NYGC), Marcin Imielinski (Weill Cornell Medicine & NYGC), Ross Levine (Memorial Sloan Kettering Cancer Center) and Sohail Tavazoie (The Rockefeller University).

  • Computational Cancer Genomics Working Group Evening Lectures
    Computational Cancer Genomics Working Group is led by Simon Tavaré, PhD, NYGC and Columbia University, and Sohrab Shah, PhD, Memorial Sloan Kettering Cancer Center. This group will build collaborations that apply novel statistical approaches and population-level analyses to major cohorts in cancer genomics.

  • Neurodegenerative Disease Working Group Evening Lectures
    The NYGC is leveraging the success of the Center for Genomics of Neurodegenerative Disease (CGND) to extend our work across a range of neurodegenerative diseases that have pathways in common with ALS, including Alzheimer’s, Parkinson’s and Huntington’s diseases. The NYGC has created a new Neurodegenerative Disease Working Group, led by Alison Goate, DPhil, Icahn School of Medicine at Mount Sinai, Hemali Phatnani, PhD, NYGC, and Phil De Jager, PhD, MD, MMSc, Columbia University Irving Medical Center, with the objective of bringing together researchers from NYGC’s institutional founding members, NYGC faculty, senior faculty, NYGC technology development and computational scientists, and affiliate members to discuss the underlying disease mechanisms in neurodegenerative disease.

  • Population Genomics Working Group Evening Lectures
    The NYGC has created a Population Genomics Working Group that brings together leading population and statistical geneticists and focuses on human population genomics, statistical analyses, and applications to precision medicine. The group is led by Eimear Kenny, PhD, of the Icahn School of Medicine at Mount Sinai, and Adam Siepel, PhD, of Cold Spring Harbor Laboratory.