TIF WEBINAR SERIES 2026 | Bridging the Communication Gap in Haemoglobinopathy Care
Effective communication sits at the heart of quality healthcare yet for patients living with thalassaemia and sickle cell disease, navigating medical consultations can feel overwhelming, intimidating, or even disempowering.
This year, the Thalassaemia International Federation (TIF) launches a transformative quarterly webinar series designed to strengthen dialogue between patients, families, and healthcare providers across the global haemoglobinopathy community. Through practical tools, lived experience, and expert insights, we aim to build a culture of partnership where every voice matters.
Series Overview
Under the skilled moderation of Mr. Frank Somma, each 90-minute session brings together clinicians, communication specialists, and patient advocates to explore practical strategies for more effective, empathetic, and collaborative care. All webinars are delivered in English and archived on TIFLIX for on-demand access.
| Quarter | Date | Title | Focus |
| Q1 | 27 March 2026 | “Speaking Up, Being Heard” | Empowering patients to navigate medical consultations with confidence |
| Q2 | June 2026 | “Shared Decisions, Better Outcomes” | Navigating complex treatment choices together—including gene therapy and novel agents |
| Q3 | September 2026 | “Listening with Empathy” | Building clinician skills for compassionate communication and cultural humility |
| Q4 | November 2026 | “Voices That Shape Policy” | Translating lived experience into advocacy impact at national and global levels |
Each session features interactive elements, real-world case scenarios, and actionable resources, including multilingual patient handouts and clinician checklists to ensure insights translate into practice.
UPCOMING: Q1 Webinar
“Speaking Up, Being Heard: How Patients Can Navigate Medical Consultations”
Date: Thursday, 27 March 2026
Time: 15:00–16:30 Athens (UTC+2) | 09:00–10:30 New York | 13:00–14:30 London
Duration: 90 minutes
Language: English (live captioning available)
Platform: Zoom Webinar (link provided upon registration)
Meet Our Expert Panel
Dr. Kathleen Durst
Healthcare Communication Specialist
United States
→ Shares practical tools to prepare for appointments, organise questions, and overcome anxiety before consultations.
Dr. Sophia Delicou
Consultant Haematologist
Hippokration General Hospital, Athens, Greece
→ Offers the clinician’s perspective on what she wishes patients would share and how honesty transforms care.
Mrs. Michelle Campbell
Parent Advocate & Educator
Pennsylvania, United States
→ Discusses advocating for your child in paediatric consultations, school coordination, and transition planning
Mr. Viresh Piplani
Adult Patient with Lived Experience
Mumbai, India
→ Recounts his personal journey from silence to confidence—and how finding his voice changed his health outcomes
Mr. Frank Somma
Moderator
→ Guides a dynamic, solution-focused conversation with practical takeaways for all participants
What You’ll Gain
✓ Strategies to discuss symptoms, side effects, and daily challenges without fear
✓ Tools to prepare children and teens for self-advocacy in clinical settings
✓ Confidence to request clarification, second opinions, or additional support
✓ Understanding of what clinicians truly need to know to provide optimal care
Who Should Attend?
- Patients living with thalassaemia or sickle cell disease
- Parents, caregivers, and family members
- Haematologists, nurses, psychologists, and allied health professionals
- Patient organisation leaders and advocates
- Medical students and trainees in haematology
How to Participate
- Register using the following link: https://tinyurl.com/mrju4mvk
- Receive confirmation email with Zoom link and pre-webinar resource pack
- Join live on 27 March—or watch the recording on TIFLIX within 7 days
- Complete our brief feedback survey to shape future sessions
- Download multilingual tools and handouts after the event
Participation is free and open to all. No TIF membership required.
Why Communication Matters
“When patients feel heard, they adhere better to treatment. When clinicians listen deeply, they diagnose more accurately. When families speak up, care becomes truly patient-centred.”
Research shows that strong patient–clinician communication correlates with:
- 34% higher treatment adherence
- 28% fewer hospitalisations
- 41% greater patient satisfaction
- Improved mental health and quality of life
Yet globally, many patients, especially in low-resource settings or from marginalised communities, lack the tools, confidence, or cultural permission to speak openly in clinical settings.
Stay Connected
Questions? Contact thalassaemia-rm@thalassaemia.org.cy
Watch past webinars: https://tiflix.tv/
Organised by the Thalassaemia International Federation with support from our global network of member organisations. This initiative aligns with TIF’s Strategic Plan 2025–2027: “Leaving No One Behind.”
This educational initiative is made possible through the generous support of Bristol Myers Squibb (BMS) and Agios Pharmaceuticals.
