PLATINUM2023

The Rare Cancer Research Foundation

aka RCRF, Pattern.org   |   Durham, NC   |  rarecancer.org

Mission

The Rare Cancer Research Foundation is dedicated to curing rare cancers through strategic investments and collaborations that catalyze effective research and accelerate deployment of promising therapies. Our mission is to enable rare cancer research.

Ruling year info

2014

Founder and Chairman

Mark J Laabs

President - Rare Cancer Research Foundation

Marshall Thompson

Main address

703 Foster St

Durham, NC 27701 USA

Show more contact info

EIN

46-3405526

NTEE code info

Cancer Research (H30)

IRS filing requirement

This organization is required to file an IRS Form 990-N.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Rare cancers are the leading cause of cancer deaths in the US. Most rare cancers do not have effective therapies and the development of new treatments is blockaded by the lack of sufficient research infrastructure. Rare cancers represent 27% of all cancer diagnoses. The 5-year survival rate is lower for patients diagnosed with a rare cancer.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Pattern.org

Pattern.org is an online patient consent and engagement platform that allows cancer patients, regardless of treatment location in the U.S., to donate fresh, living tissue to research. The tissue is overnighted to critical research projects at renowned institutions such as the Broad Institute of MIT and Harvard, M.D. Anderson, Emory University and the Koch Institute of MIT to be utilized to create living models, generate sequencing data and be utilized for CRISPR and drug screens. Results from these studies are deposited into the public domain so that researchers worldwide have access.

Population(s) Served
People with diseases and illnesses
Ethnic and racial groups

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of invitations for advocates to speak as experts

This metric is no longer tracked.
Totals By Year
Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Context Notes

2023 - 5 to date

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

With our globally accessible network of patients, researchers, and partner organizations, RCRF continues to develop an ecosystem of support for all rare cancer research.

We enable patient donations of excess fresh tissue and fluid by coordinating collection and transfer from any U.S. hospital to world-leading academic institutions. These donations enable critical research such as creation of cell lines & animal models, genome sequencing and other insights based on medical context.

These efforts are accelerating our understanding of rare cancers and reducing the time to new and effective therapies. Any resulting models, as well as any associated de-identified clinical data, are then placed in the public domain, helping researchers worldwide accelerate their scientific research.


Pattern.org, an initiative of RCRF, is a online patient engagement platform that empowers cancer patients to take an active role in advancing research for their disease.

To date hundreds of cancer patients have donated fresh tissue samples through our pattern.org initiative which thus far has led to the development of over 58 cell lines. These cell lines are or will be available through public biorepositories such as ATCC in Manassas, Virginia. In addition, genomic data from these tissue samples are also available in public data repositories. Some of the developed models are also currently undergoing CRISPR screening and that data will also be placed in the public domain once available.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We take steps to get feedback from marginalized or under-represented people, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, The people we serve tell us they find data collection burdensome

Financials

The Rare Cancer Research Foundation
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

The Rare Cancer Research Foundation

Board of directors
as of 06/08/2023
SOURCE: Self-reported by organization
Board chair

Mr. Mark Laabs

Rare Cancer Research Foundation

Term: 2014 - 2024

Chris Heery

Arcellx

Barbara Van Hare

Rare Cancer Research Foundation

Ben Abram

Modern Energy

Mark Laabs

Modern Energy/Faro

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 3/20/2023

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender
Sexual orientation
Gay, Lesbian, Bisexual, or other sexual orientations in the LGBTQIA+ community
Disability status
Person without a disability

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

No data

Equity strategies

Last updated: 03/20/2023

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We disaggregate data by demographics, including race, in every policy and program measured.
Policies and processes
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.