Rare Cancer Committee Meeting

A National Workshop Building a Systemic Approach to Defeat Rare Cancers

November 8-9, 2023 | Cleveland, Ohio

Funding support is available for transportation, meals, and lodging.


The Case Comprehensive Cancer Center is sponsoring a gathering in partnership with the Jedi Rare Cancer Foundation and the Rare Cancer Research Foundation to incubate a collaborative effort dedicated to defeating rare cancers and addressing an increasing concern that there is a lack of a national strategy on how best to approach rare cancers in the United States. This initial meeting, with the aid of an experienced facilitator, invites a group of established leaders—cancer center directors, preclinical and clinical academics, government officials active in the development of rare cancer initiatives, philanthropic rare cancer leaders, and leaders in rare cancer patient advocacy—to generate ideas that inspire innovative actions based on a shared belief that we can transcend the challenges that have prevented innovation and progress for rare cancer patients, who comprise over 25% of annual cancer diagnoses.

The goals of the November Rare Cancer Committee Meeting are to:

  • Reach an actionable consensus on the requirements and pathways to build out a systemic approach to accelerate discovery and treatment in the advancement of rare cancers as we know them today.
  • Frame the challenge and build a framework of achievable goals/obstacles, ideate core infrastructure requirements, identify existing success models and collaborative mechanisms, identify the need for resources and access, and understand the government’s role and how to leverage their resources.
  • Build a framework and agenda for a larger National Rare Cancer Summit to be held in 2024.

To help frame the discussion, a “landscape study” has been commissioned to aid in setting an agenda that allows us to identify key assumptions that can help build a platform for the day’s discussion.

This forum will be different because:

  • It is not a meeting of prescribed presentations. Rather, it is a structured workshop that will benefit from each participant’s experienced wisdom, passion, and creative capacity.
  • It is designed to be the beginning of a process in which the ultimate goal is to build a strategy for developing specific initiatives that will result in the transformation of how we approach rare cancers.
  • It challenges all participants to collaborate and think about designing a system that benefits rare cancer patients and the institutions that serve them.
  • It uses proven techniques from the science of strength, positive psychology, and positive organization scholarship to build multi-stakeholder collaboration at a scale of the entire enterprise.
  • The forward action plans resulting from the steering committee (and the 2024 Summit) are intuitive and will emerge from the creative discussion that comes out of the meeting.
  • The success of the November meeting (and the 2024 Summit) depends on the engagement and commitment of the participants, not the event planners.

Meeting Preparation

In preparation for the meeting, we are asking you to do some “homework.” This includes a review of the “Landscape Study Summary,” a brief reading on "Appreciative Inquiry,” proposed pillars or design agendas for a systemic approach, and 2-3 thought questions to reflect on. This will be sent to participants 2-3 weeks prior to arrival.


Rare Cancer Committee Kickoff Dinner

Wednesday, November 8, 2023
6:30-9:00 p.m. EST

Tinkham Veale University Center Ballroom C
11038 Bellflower Rd.
Cleveland, OH 44106

6:30 p.m.

Cocktail Reception

7:00 p.m.

Formal Welcome & Dinner

7:30 p.m.

Breakout Group Activity & Discussion

9:00 p.m.


Rare Cancer Committee Workshop

Thursday, November 9, 2023
8:30 a.m.-4:30 p.m. EST

Linsalata Alumni Center
11310 Juniper Rd.
Cleveland, OH 44106

8:30 a.m.


9:00 a.m.

Review the Purpose, Objectives, and Flow of the Day

  • Discussion, feedback, and elaboration on key pillars or design areas to build a systemic approach to rare cancer research
  • Review of current and projected role of government in rare cancer research
  • Brainstormers around each key pillar or design area
  • Subgroups sort, cluster, and prioritize ideas 
10:30 a.m.

Midmorning Break

10:45 a.m.

Resume Workshop

12:30 p.m.

Working Lunch: Building Shared Purpose and Direction for a National Summit

  • Subgroup sharing
  • Collective feedback on key pillars or design areas for a systemic approach
2:30 p.m.

Midafternoon Break

2:45 p.m.

Co-creating the Call for a National Summit

  • Forming the affirmative topic and objectives for the summit
  • Stakeholder mapping
    • Who should be invited
    • How best to approach
  • Pre-summit momentum building and communications
4:30 p.m.



Courtyard Cleveland University Circle
2021 Cornell Rd.
Cleveland, OH 44106

CWRU Cancer Committee Group Rate: $169 USD/night
Start Date: Wednesday, November 8, 2023
End Date: Friday, November 10, 2023
Last Day to Book: Wednesday, October 18, 2023

Book Your Group Rate for CWRU Cancer Committee


Please contact Alex Carolan at axc1469@case.edu with questions.