Because Sarcoma is “rare” – it does not deserve a “rare voice.” Many times sarcomas are misdiagnosed due to the complexity and diversity of the tumors. There are 100+ sarcoma subtypes in the sarcoma landscape. Therefore, identifying/diagnosing sarcoma can be challenging and difficult. Patients must be vigilant in their diagnosis, care, and treatment when faced with a sarcoma diagnosis.
The Sarcoma Coalition has made great strides since its inception in 2017. The list of collective Sarcoma Coalition accomplishments are found below and are the result of the Roundtable inclusive group discussions and the sharing of information and perspectives among member groups. Such discussions have brought forth expert guest speakers to provide new information that is vital to impacting the best outcomes for patients. Education within the Sarcoma Coalition has led to increased information sharing among the member organizations that has further strengthened their support and advocacy within their respective patient communities.
Patient Advocates benefit and Patients and Families benefit from what is learned within the Sarcoma Coalition.
This is how the Coalition has come together to work together – in the spirit of collaborative communication, collective interest in topics that offer important insights to take back to patient communities for further awareness, education, and action as deemed important to the specific patient advocacy groups within the Coalition.
SARCOMA COALITION IN ACTION: 2024 – 2025
1. New Sarcoma Coalition Steering Committee members named and welcomed in 2024. New Advisory Committee
Member: Dr. Scott Okuno named by SARC in support of the Coalition.
2. Continued Patient Advocacy Education Sessions as posted for 2024 and 2025 – for sharing with patient communities
served, and 6 recorded sessions will have been posted in the Sarcoma Coalition website: Basic Research – Epigenetics,
Circulating Tumor DNA Panel Update, Clinical Trials Update – INTENSIFY Phase ½, Genomic Testing, Pathology,
and Nutrition / Wellness.
3. Sarcoma Coalition representation at annual sarcoma conferences: ASCO and CTOS with Coalition Poster and
handout information at the Patient Advocacy Lounges as well as at SARC meetings.
4. GOLF BALL PROJECT– An expansion of the program continues with several patient advocacy organizations that
welcome taking up this cause – to advance the important information about ” the red flag lumps and bumps.”
Patient awareness continues to be an important focus area for ongoing education. Sending this information to Medical Schools was started with Aidan O’Brien, Steering Committee member in 2023 – 2024 through SARCOMA STRONG.
5. Review of the Sarcoma Coalition Mission statement for revision and refresh, finalized and posted on the Coalition
website Review and update of website webpages as well.
6. Review of Sarcoma Coalition member organizations to contact them and discuss their needs / their perspectives about the
Coalition, and their intended contribution to the Coalition going forward.
Develop a Sarcoma Coalition Membership Directory headed by Erin Miller, Steering Committee leader – to reflect a
contact person in each organization and a tele. number / email address.
7. Introducing important legislative information through Veronika Panagiotou, Cancer Policy and Advocacy
Team (CPAT), Survivorship Champions of the NCCS and Coalition Advisory Member on an ongoing basis to fully inform Coalition members.
8. Dotty Shead, Patient Information Operations Director, NCCN / Sarcoma Coalition
Advisory Member – discussion with the Coalition membership to highlight the NEW
2025 NCCN Guidelines for Patients: Soft Tissue Sarcoma and Bone Sarcoma, now available in the Sarcoma Coalition
website Resource Library. She will also cover the Survivorship and Caregiving Guidelines
9. CURE ID information presented by Heather Stone – of the FDA – for Repurposing Drug initiative for Sarcoma – a
briefing to Coalition Members – a request for an update and the tool kit for patients requested. – to be presented in
2026.
10. NCCS worked with Edge Research to conduct our fifth nationwide survey of cancer survivors and
caregivers. This study captures a range of perspectives to better understand how
NCCS can support its mission to advocate for quality cancer for all.
11. General Meeting highlight summaries now sent to Coalition Members after each general quarterly meeting.
12. Sarcoma Coalition Snapshot News now sent to Coalition Members introduced for Patient Advocacy organizations
on a bi weekly basis to stay connected with newsworthy information.
13. Encouraging new information on collaborations with other organizations that offer legislative updates, reach out to
sarcoma patients that are otherwise unaware of the Coalition – to encourage information awareness in the Cancer
world – building information awareness among pan cancer organizations that have
an opportunity and desire to support the Sarcoma Coalition’s mission and purpose
14. Patient Organizations continue to have information resource updates to share with their patient communities – such
as: Savor Health – Precision Nutrition for patients – and in support of Caregivers –
https://www.gicancersalliance.org/resources/introducing-ina-the-intelligent-nutrition-assistant-from-savor-
health/ as well as financial assistance organizations to such as the Grace Foundation and more.
all such resources shared during the Sarcoma Coalition General Meetings.
15. Listing of Second Opinion entities – options for Patients provided and posted in the Coalition website for Patient
Advocacy Groups. An new organization for this same option to be discussed in 2026 by Ohio State – James Cancer
Center.
16. Dr. David Liebner has reached out the Sarcoma Coalition for volunteers to be a voice in representing the patient
community in the design and objectives of his recently approved sarcoma research / trial. This came about through
the recommendations of our newest Advisory Committee Member- Dr. Scott Okuno, Mayo Clinic Sarcoma Director
17. Dr. Ernest Conrad leading SARC has reached out to the Coalition for support and collaboration for future patient
advocacy related activities initiated by SARC. He provided a presentation to
Coalition Members on the newest Sarcoma Center Directory and the SARC Tumor Board.
18 Dr. Scott Okuno, Medical Advisory of SARC, and Coalition Advisory Committee Member, discusses his role at
SARC and his collaborative efforts within the Coalition as an Advisory Committee member,
highlighting SARC Talk podcasts, the SARC Tumor Board, and the new Directory.
19. The Sarcoma Coalition has an opportunity to be a part of the new Patient – Caregiver Community
Roundtable – “Think Tank” launched for patients and patient organizations to come together and
to contribute / share patient experiences, hear expression of unmet needs, and come together to prioritize the unmet
needs and work together as a common ground project for 2026. This is a National Leiomyosarcoma
Foundation initiative. for all.nInformation compilation will be shared with the Coalition for further discussion and action strategies for 2026.
20. THE TRACER PROJECT with Dr. Taran Gujral- 2025 collaboration for Sarcoma through the National LMS
Foundation – to be announced in 2026 through a presentation by the lead researcher Dr. Taran Gujral, Fred
Hutchinson Cancer Center, Gujral Lab. Another initiative to address the Repurposing of Drugs for Sarcoma on
January 15, 2026 General Meeting of the Coalition. More to come from CURE ID, Heather Stone of the FDA.
Prior Accomplishments:
- Denise Reinke, former CEO of SARC, secured an unrestricted grant to establish the Sarcoma Coalition (see screenshot below) Denise also made a personal monetary contribution to the Coalition in 2017
- Development of the logo and tag line “We are Here for You” to build the organization/website brand with the Coalition vote
- Development of the website and its content pages-https://sarcomacoalition.us/ – with input by the Coalition
- Developed a communication system for “cross talk” among member
organizations - Developed a new Facebook page for this same purpose
- The Sarcoma Golf Ball Project- introduced through the S C Meeting, and other sarcoma organizations/foundations were inspired to adopt – Northwest Sarcoma Foundation, Rein In Sarcoma, and NLMSF for example, with a purpose of connecting with community providers to alert to lumps and bumps up to the size of a golf ball – a project initiated by Dr. Robert Grimer, a leading sarcoma surgeon, at the Royal Orthopedic Hospital in the UK, and featured in the EJSO Journal of Cancer Surgery in 2015, and brought to the attention of the Coalition by Denise Reinke. See video
- Identification of potential cooperative legislative opportunities – a resource support (Nancy Goodman-Kids v Cancer)
- Connecting Sarcoma Coalition membership with the FDA- Dr. Leslie Doros, Medical Officer – to encourage listening sessions with their respective patient communities – in support of the patient/family sarcoma community
- Presentations from teams representing the NCI-My PART and Count Me In initiatives. Patient-partnered research which is changing the future of cancer
- Connecting Sarcoma Coalition membership with resource information for clinical trial-based care, for travel and lodging reimbursement in support of patients and their families
- Providing resource information to support Sarcoma Coalition membership advocacy/organizations/foundations with information on the subject of Pathology, to provide emphasis in patient guidance on accurate pathological diagnosis of sarcoma and its importance in proper treatment strategy, which ultimately impacts prognosis. Drs. Hornick and Rubin supported the Coalition in this endeavor, in addition to Dr. Hornick’s recent presentation to the Coalition. See video
- Telemedicine perspectives from a sarcoma research clinician’s lens, to bring information to the advocacy/organizations/foundations that could have an opportunity to rally around needed legislation and other actions to help patients – establish a strategy of impact on a variety of fronts in the telemedicine landscape
- Creating an informative Sarcoma Coalition Newsletter to stay connected and invite constructive feedback from the Coalition membership
- Getting to know our own sarcoma community better by highlighting a guest speaker at the General Membership meeting from various advocacy organizations/foundation
- Sarcoma Coalition members gathering informally (outside of scheduled meeting) to get to one another and welcome new members
- Reviewing the List of Sarcoma Centers of Excellence for important updating to ensure accuracy for patient access
- The NCCN Sarcoma guidelines update for 2020 (patient / provider versions) with designated Sarcoma Coalition support – with all sarcoma patient advocacy groups listed in the Guidelines. https://www.nccn.org/patients/guidelines/content/PDF/sarcoma-patient.pdf
- Dr. Leslie Doros, a pediatric hematology-oncology specialist in Washington, DC. She currently practices at Children’s National Health System. Dr. Doros is board certified in Pediatric Hematology-Oncology. and current representative at the FDA was discussed with the Coalition to inform and encourage patients to participate in patient driven natural history data – for data to be impactful for clinical trial design, as well as overall treatment and care improvements
- Dr. Nilsa C. Ramirez, a research pathologist in Columbus, Ohio and is affiliated with multiple hospitals in the area, including James Cancer Hospital and Solove Research Institute and Nationwide Children’s Hospital, spoke to the Coalition about the importance of biospecimens for research in clinical care. This translates into amplifying information for patients to know and understand the importance of accurate pathology for their care and treatment protocol decisions made collaboratively with their sarcoma care team
- Summary of the ESMO SPAEN Meetings in Milan, Italy February 2020: Discussion of Research Highlights during the ESMO Research meeting as well as SPAEN patient advocacy meeting presentation to discuss the Sarcoma Coalition
- Three new Steering Committee members voted in by the Coalition Membership in January 2022.
- Advisory Panel to the Sarcoma Coalition Steering Committee and Coalition Membership fully established in 2022.
- The Sarcoma Coalition website was revised / updated with new resource information, and new membership updates.
- Telehealth letter from the Sarcoma Coalition to represent the sarcoma community in support of telehealth legislation currently under Congressional review.
- The EveryLife Foundation – Rare Disease Legislative Advocates Program Director, Shannon von Felden, was invited to discuss the current legislation and guide the Coalition in submission of the Telehealth support letter, in response to Dr. Mihaela Druta’s request for Coalition call to action during her
telehealth presentation. The telehealth letter was submitted to the Rare Cancer Congressional Caucus in February of 2022. - Update of the Sarcoma Coalition Member organizations – as of January 2022.
- Supportive Care – as a component of “standard of Care” vs palliative care presentation by Ishwaria Subbiah, MD. Dr. Subbiah is a Palliative Care physician and medical oncologist at the University of Texas MD Anderson Cancer Center. The purpose of this presentation was to share important
perspectives of palliative care that could assist Coalition member organizations to share the information with their respective patient-family communities. - Sarcoma Coalition FACEBOOK platform established for Coalition Membership communication / ongoing connection.
- 2021 Revision of the Sarcoma Coalition Operational Guidelines, member Partnership Agreement for review and acceptance by Coalition members (voting).
- NCI – MyPART Minute Newsletter – showcased the Sarcoma Coalition, discussing its patient-centric mission, purpose, and highlighting a new Coalition Advisory Panel.
https://content.govdelivery.com/accounts/USNIHNCI/bulletins/2f55aad - Meaningful Engagement of the Patient in Rare Cancer Research: Sarcoma as an exemplar – by
Denise K. Reinke – PubMed publication: https://pubmed.ncbi.nlm.nih.gov/34289946/