Shaping the Future of Low-Grade Serous Ovarian Cancer

At STAAR Low-Grade Serous Ovarian Cancer, we are committed to advancing research and advocacy to improve the lives of those affected by low-grade serous ovarian cancer (LGSOC). By amplifying patient voices, we empower the LGSOC community and influence the future of cancer treatments.
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In October 2023, STAAR Low-Grade Serous Ovarian Cancer Foundation made history by hosting the first-ever Externally-led Patient-Focused Drug Development (EL-PFDD) meeting for any type of ovarian cancer. This groundbreaking event brought together patients, caregivers, researchers, and the FDA, amplifying the voices of the LGSOC community to influence drug development and research priorities.

We led the way for rare cancer advocacy – and our impact continues.

Explore the Voices of LGSOC Report and watch the meeting recording to see how our community's stories are shaping the future of LGSOC treatments.

Groundbreaking Insights: Voices of LGSOC Report

The Voices of LGSOC Report documents the lived experiences shared during the first-ever EL-PFDD meeting for any ovarian cancer. It provides unprecedented insights into the challenges faced by the LGSOC community, including treatment gaps, emotional impacts, and the urgent need for targeted therapies.

By amplifying patient voices, the report is influencing FDA decision-making, guiding clinical trials, and inspiring researchers to develop more effective treatments for low-grade serous ovarian cancer.

Key Insights from the Voices of LGSOC Report

This report uncovers critical challenges faced by LGSOC patients, highlighting the need for more effective treatments and increased research funding. Here are some of the most impactful findings:
  • Recurrence and Treatment Needs:
    • Up to 80% of LGSOC patients experience recurrence, emphasizing the urgent need for more effective, targeted therapies. Current treatments, including chemotherapy and aromatase inhibitors, often lead to severe side effects that impact daily life.
  • Emotional and Physical Burdens:
    • Patients face chronic fatigue, menopausal symptoms, anxiety, and depression. Early menopause and infertility are particularly devastating for younger women, impacting relationships and mental health.
  • Lack of Standardized Care Pathway:
    • There is no standardized care pathway for LGSOC, leading to inconsistent treatment approaches and outcomes. This underscores the need for increased education and awareness among healthcare professionals.
​"Despite the challenges, the LGSOC community remains resilient and hopeful. Patients and caregivers continue to advocate for FDA-approved treatments, better research funding, and increased awareness to improve quality of life and survival outcomes."

Relive History: Voices of LGSOC EL-PFDD Meeting

Hear the Voices That Made History

Experience the powerful stories shared by LGSOC patients and caregivers at the first-ever EL-PFDD meeting for ovarian cancer. These heartfelt testimonials and expert discussions are influencing the future of cancer treatments.

Key Moments to Watch

This meeting featured:
  • Patient Testimonials: Powerful, emotional stories about living with LGSOC.
  • Caregiver Perspectives: Honest accounts of supporting loved ones through a rare cancer journey.
  • Expert Insights: Discussions on the urgent need for better treatments.
  • FDA Engagement: Direct dialogue influencing future drug development.
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Watch the full recording and see how the LGSOC community is driving change.

​Impact and Next Steps 

The first-ever EL-PFDD meeting for ovarian cancer was a historic milestone, amplifying the voices of LGSOC patients and caregivers. This meeting has:  
  • Influenced FDA Decision-Making: Ensured patient experiences are considered in future drug development and clinical trials.  
  • Guided Research Priorities: Highlighted the urgent need for more effective, targeted therapies for LGSOC.  
  • Strengthened Community Advocacy: Empowered patients and caregivers to continue advocating for better treatments and support.  
STAAR Low-Grade Serous Ovarian Cancer Foundation is committed to driving change by:  
  • Collaborating with Researchers and Drug Developers to accelerate the development of targeted therapies.  
  • Continuing Advocacy Efforts to influence policy changes that benefit LGSOC patients.  
  • Building  Community Support and Awareness to ensure that no patient fights alone.  
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How You Can Get Involved:  
  • Donate to Support Research: Your contributions directly fund cutting-edge research for better treatments.  
  • Share Your Story: Join our advocacy network and help us amplify the voices of LGSOC patients and caregivers.  
  • Stay Connected: Subscribe to our newsletter for updates on research, advocacy, and community events.

Thank you to the meeting sponsors and partners

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