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SDS Alliance meets with the White House Cancer Moonshot Team

September 30th is Rare Cancer Day. We marked the day by taking action and meeting with the White House Cancer Moonshot initiative in collaboration with our colleagues at the Heritable Cancer Prevention Coalition (HCPC). Our goal is to assist the Cancer Moonshot Initiative with its ambitious goal of cutting the age-adjusted cancer death rate by at least 50% over the next 25 years – with our focus being on heritable blood cancers.

Shwachman-Diamond Syndrome (SDS) fits into several different categories of disease. Most importantly, it is a cancer predisposition disorder – causing heritable blood cancers. Accurate and timely diagnosis is critical not only for better outcomes for patients with the treatment options available today but also for research and therapy development tomorrow. The learnings and therapeutic advances can impact a wide range of cancers beyond those related to SDS. Our focus here at the SDS Alliance is to drive therapy development toward eliminating the leukemia risk in SDS, or in other words, cancer prevention. In the meeting with the White House Cancer Moonshot team, we highlighted and emphasized these shared goals.

The HCPC is comprised of leaders from the Runx-1 Research Project (RRP), the Shwachman-Diamond Syndrome Alliance and Team Telomere - rare disease groups united by a shared goal of improving the detection and treatment of heritable blood cancers for their respective patient communities.

HCPC members – including Dr. Eszter Hars of the Shwachman-Diamond Syndrome Alliance – and Cancer Moonshot officials met on Friday, September 30th to discuss partnering on their similar goal of improving cancer detection and treatment, as well as enabling new cancer prevention strategies for blood cancers. As experts in this field, HCPC members offered to be a resource to the White House Cancer Moonshot 2.0 leadership team and to support its efforts to make meaningful progress against cancer.

We are all in agreement that leveraging precision medicine to enhance screening, customize treatments and enable the discovery of cancer prevention interventions are critical toward improved cancer survivorship and quality of life. We also highlighted the crucial role genetic testing plays in the early detection and prevention of heritable blood cancers in the general population. In addition to compelling statistics, we took the opportunity to share personal stories from our communities to drive the urgency home.

Dr. Catharine Young from the White House shared her commitment to meeting with the coalition again to establish actionable steps towards the goals discussed.

Stay tuned for updates!


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