Invitation to PREVENTABLE Upcoming Thematic Webinar: Breaking Financial Barriers in Rare Disease Care

Join us for the PREVENTABLE Thematic Webinar to explore the pressing financial challenges and innovative solutions surrounding the care of patients with Rare Tumour Risk Syndromes (RTRS) across Europe.

With healthcare systems under pressure and rare disease patients facing major hurdles in access and affordability, this webinar brings together a distinguished panel of policymakers, economists, healthcare providers, insurers, and patient advocates to address:

  • Healthcare system models and their impact on RTRS care
  • Streamlining reimbursement and funding access for patients and reference hospitals
  • Investing in early detection and prevention to reduce long-term costs

This webinar is tailored for:

  • Health economists, policymakers, and insurance experts
  • Oncologists, geneticists, and healthcare professionals
  • Patient advocacy groups and rare disease stakeholders

Topic: Ensuring Sustainable Healthcare Financing for Rare Tumour Risk Syndromes (RTRS): Reimbursement, Prevention, and Policy Solutions

Date & Time: 25 June 2025, 14:00 CEST Brussels Time.

Location: Zoom Video Conference (registration required)

Agenda

Moderator from EHMA team will introduce the webinar and outline the session’s objectives

A presentation entitled “Overview of Healthcare Financing Mechanisms and Key Challenges for RTRS” by Rebecca-Evelyn Papp – EHMA

Panel discussion in “Navigating Reimbursement Pathways and Financial Challenges in RTRS Care – Building a Case for Prevention and Sustainable Funding Models” moderated by Alexis Strader – EHMA

The EHMA team will summarize key takeaways from the session and highlight next steps for implementing recommendations and fostering continued collaboration across Europe.

Featured Speakers

Tamara Hussong Milagre

President

EVITA Association – Hereditary Cancer
Portugal

Tamara Hussong Milagre is a passionate advocate for improving healthcare systems, with a focus on saving lives and supporting families affected by Hereditary Cancer Syndromes. Through her leadership in EVITA and the EVITA Platform, she champions awareness, community empowerment, and technological solutions to enhance access to vital resources. Her mission is to drive meaningful change and foster collective action in the fight against hereditary cancers.

Prof. Dr. Céu Mateus

Professor in Health Economics

Lancaster University
UK

Prof. Dr. Céu Mateus is a Professor of Health Economics in the Division of Health Research at Lancaster University. She has over 25 years of experience in research and has developed her expertise around economic evaluation of health technologies and interventions, efficiency measurement, equity and quality of life. She has been involved in several scientific associations in the field of health care such as PCSI, EuHEA and the Portuguese Chapter of ISPOR. She is responsible in creating the model costs and outcomes for RTRS patients.

Grace Hampson

Associate Director

 Office of Health Economics
UK

Grace Hampson is a health economist specializing in value assessment, reimbursement, and healthcare decision-making. Her research focuses on health technology assessment and innovative payment models, especially for cutting-edge treatments like cell and gene therapies. She also has a keen interest in public health and nutrition, recently completing an MSc in Nutritional Medicine.

Kristiina Kahur, MD MPH

CEO

Nordic Casemix Centre
Finland

Kristiina Kahur, MD, MPH,is the CEO of the Nordic Casemix Centre in Helsinki and an expert in casemix systems. With extensive international consulting experience across Europe and Asia, she collaborates with the WHO and World Bank and other organisations. Kristiina has a strong background in healthcare financing, strategic purchasing, digital claims management, data quality and coding systems. She formerly held senior roles at the Estonian Health Insurance Fund. She is also a member of the Executive Committee of PCSI.

Don’t miss this crucial discussion on how to build equitable and sustainable healthcare financing solutions for RTRS patients across Europe.

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