GANSID Patient & Community Empowerment Webinar Series
Overview
The GANSID Patient & Community Empowerment Webinar Series is an interactive, patient-focused online learning initiative designed to strengthen the skills, knowledge, and confidence of people affected by inherited blood disorders, including patients, caregivers, advocates, and community leaders.
This series goes beyond medical education to support effective advocacy, strong governance, informed disease management, and sustainable community leadership, helping patient communities play an active role in improving care, policy, and outcomes worldwide.
Who the Series Is For
- People living with inherited blood disorders
- Parents, caregivers, and family members
- Patient advocates and community leaders
- Leaders of patient organizations and support groups
- Emerging patient voices seeking to make an impact
What Participants Will Learn
- Advocacy skills: Engaging policymakers, influencing health policy, and raising awareness
- Governance & leadership: Building and managing effective patient organizations
- Disease understanding & management: Navigating care, treatment options, and long-term health
- Patient rights & health equity: Understanding access, inclusion, and ethical care
- Research & trials: Meaningful patient engagement in research and clinical trials
- Communication & storytelling: Sharing lived experience to drive change
- Well-being & resilience: Mental health, caregiver support, and community strength
Series Format
- Live, virtual webinars with interactive Q&A
- Sessions led by patients, advocates, clinicians, and policy experts
- Practical, real-world tools and examples
- Opportunities for peer learning and global exchange
- Designed to be accessible across regions and resource settings
Why This Series Matters
- Strong patient communities are essential to improving care, access, and outcomes for inherited blood disorders. This webinar series:
- Builds practical skills for advocacy and leadership
- Empowers patients and caregivers to engage confidently with health systems
- Strengthens patient organizations and governance structures
- Amplifies patient voices at local, national, and global levels
- Promotes equity, inclusion, and sustainable impact