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The Desmoid Tumor Research Foundation

DTRF Receives Global Genes Champions Of Hope “Rare Champion In Advocacy (Foundation)” Award

Patient Advocacy

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*Update: Watch Jeanne Whiting, DTRF Co-Founder, accept the Global Genes Champions of Hope “RARE Champion in Advocacy” Award (beginning at time code 52:42).*

We’re thrilled to share that the DTRF has been honored with the Global Genes Champions of Hope “RARE Champion in Advocacy (Foundation)” award!

Through the RARE Champions of Hope Awards, Global Genes honors and recognizes “true champions for rare disease.” At the awards ceremony on November 18th, Global Genes recognized leaders who have made a significant impact in advocacy, industry, medical care, science, as well as up-and-coming rare disease leaders.

We were honored to be in the company of our fellow nominees and we deeply appreciate this significant recognition from Global Genes.

Our work would not be possible without the support of our incredible desmoid tumor community! THANK YOU!

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This summer, the DTRF submitted a proposal to the CDC for a new ICD-10 code specific to the diagnosis of desmoid tumor, including subcategories for tumor location. We believe a specific desmoid tumor code will improve research as well as patient care.

After review by the CDC, the proposal was set to be presented to the CDC’s ICD-10 committee on September 14th.

At the meeting, Dr. Breelyn Wilky, a DTRF Scientific Advisory Board member, gave a 10-minute presentation about desmoid tumors, followed by the outline of the proposed code, and then answered questions. The entire meeting is available to view on the CDC website: Day 1, with Dr. Wilky’s presentation starting at time code 5:53:22.

No decisions are made at this meeting. We want to thank Dr. Wilky for her time and commitment to this effort!


For the latest information, please visit our page on the ICD-10 Code effort.

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*Update: Watch DTRF Co-Founders accept the Abby S. Meyers Leadership award on behalf of the Foundation at NORD’s 2021 Rare Impact Award Ceremony (beginning at 55:45)

We are honored to announce that the DTRF and its Co-Founders Jeanne Whiting and Marlene Portnoy will be the recipients of the 2021 Abbey S. Meyers Leadership Award from the National Organization for Rare Disorders (NORD)! 

The DTRF is being recognized for its exceptional work benefiting the rare disease community. Jeanne and Marlene are grateful to NORD for this honor, which would not be possible without our supportive community and donors. 

Read the press release.

Marlene and Jeanne will accept this award at the Rare Impact Awards at *7pm ET on Monday, June 28th*. Celebrate by joining us virtually for this special ceremony!

The Rare Impact Awards are part of NORD’s annual “Living Rare, Living Stronger” Patient & Family Virtual Forum from June 26-27. This is an annual patient-focused conference, providing patients and families with practical tools for living their best lives with rare diseases. For more information about attending the conference and award ceremony, please visit https://rarediseases.org/living-rare-forum/.