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.

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.

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

1. Register using the following link: https://tinyurl.com/mrju4mvk
2. Receive confirmation email with Zoom link and pre-webinar resource pack
3. Join live on 27 March – or watch the recording on TIFLIX within 7 days
4. Complete our brief feedback survey to shape future sessions
5. 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.