What if the biggest barrier to progress in rare cancers wasn’t a lack of ideas but the inability to connect the right people and turn those ideas into real clinical trials?

In this episode of Living with Metastatic Cancer, Dr. Peter Crane sits with Dr. Scott Okuno, and Steven Young, as they describe how their organization (SARC) fills a critical gap left by broader cooperative groups. By acting as a regulatory sponsor and operational hub, SARC enables rapid multi institutional and international trials focused solely on sarcoma.

They detail the Sarcoma Centers Directory, patient advocacy partnerships, embedded patient advocates in every trial, pre ASCO and CTOS meetings, and practical ways researchers and patients can engage especially those with ultra rare subtypes such as solitary fibrous tumor.

Top 3 Takeaways

• SARC uniquely serves as a regulatory sponsor and logistics engine, converting investigator ideas into multi center trials far faster than traditional cooperative group models.
• The free Sarcoma Centers Directory (sarctrials.org) objectively lists high volume multidisciplinary centers so patients and frontline clinicians can quickly access true expertise.
• Patients are embedded in trial design and meetings; subtype specific advocacy groups plus SARC’s own podcasts and resources ensure no one has to navigate rare sarcoma alone.

About the Guests:

Dr. Scott Okuno is a sarcoma medical oncologist at Mayo Clinic Rochester with more than 30 years’ experience and serves as Chief Medical Officer of SARC.

Steven Young is CEO of SARC, he joined five and a half years ago to lead operations, fundraising, and multi center collaboration after building research consortia in solid tumors and blood cancers.

Connect with SARC

Website: sarctrials.org

Podcasts: SARC Talk, and The Journal Club Podcast

About the Host
Dr. Peter Crane is a board certified physician, educator, and storyteller with a heart for service and a calling to spotlight doctors who make a difference, in their communities, in medicine, and in the lives they touch.

Through Doctors Making a Difference, he brings you into intimate conversations with physicians who have overcome challenges, redefined success, and found purpose in and beyond the clinic. His goal is simple: to help more doctors stay in medicine by showing them what's possible.

About the Show:
Doctors Making a Difference is more than a podcast; it's a movement to highlight the good, the gritty, and the deeply human side of medicine. In every episode, physicians share stories of challenge, purpose, and connection so more doctors can stay in medicine and leave it better than they found it.

visit: doctorsmakingadifference.com

LMC Series Note:
Living with Metastatic Cancer (LMC) explores the science, decisions, and day to day realities of life with advanced disease, through candid physician patient conversations.

The Doctors Making a Difference Podcast is for informational purposes only and does not substitute for medical, legal, or professional advice. Always consult appropriate experts regarding your unique circumstances.

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