Rare Disease Dilemmas and Solutions
Filling the Knowledge Gap for Better Patient Outcomes

October 26 2023 | 4:00 – 5:00 PM CET

Climedo Connect_Rare Disease-1

Thursday, October 26 2023 | 4:00 – 5:00 PM CET 

What are the challenges posed by rare diseases and how can we address the essential needs of patients while navigating these conditions across all clinical phases? By leveraging the power of Quality of Life (QoL) data, personalized treatment algorithms and Real-World Evidence, we can build a comprehensive approach to managing these conditions effectively.

In our next Climedo Connect on October 26, Domenico Merante and Henrik Schou of CSL Vifor will present their insights and expertise on how advancements in technology, data analysis and evidence-based strategies can reshape the landscape of rare disease management and close important knowledge gaps. They will share practical examples of how the integration of these elements can offer innovative solutions to the challenges faced by both rare disease patients and healthcare professionals. Join us as we discuss:

  • Rare disease challenges, patient needs and opportunities
  • The importance of QoL data, treatment algorithms and RWE for patient outcomes
  • Best practices in rare disease data management during clinical development and in the post-approval phase
In addition to the presentations, you will have the chance to join various live surveys, network with other professionals and, of course, ask our experts any questions you may have. Registration is free of charge and all registrants will receive the slide deck and recording afterwards.

Meet Our Speakers

Laura Dosch
Laura Dosch (Host)

Account Manager

As an Account Manager at Climedo, Laura accompanies customers from the medical device and pharmaceutical sectors on their way to the successful digitalization of clinical trials. She advises companies on the use of Climedo's modular, decentralized and patient-centric solutions for EDC, eCOA/ePRO, eConsent and the integration of wearables and Telemedicine to bring the best treatments to patients.


Opinions are her own and don’t represent Climedo as a company.


Domenico Merante
Domenico Merante

Global Clinical Development TA Lead Nephrology and Orphan/Rare Disease Area
CSL Vifor

With 30 years’ medical experience as pharmaceutical physician, Domenico has proven his skills in global clinical development across various therapeutic areas (e.g. endocrine, diabetes, cardiovascular, haematology, immunology and rare kidney diseases). He combines this with 20+ years’ experience in Italy’s NHS as emergency doctor, the Italian Navy as medical officer and as a diabetic wounds specialist.
Opinions are his own and don’t represent CSL Vifor as a company.
Henrik Schou
Henrik Schou

Global Head Evidence Generation

CSL Vifor

As a Health Economist and Mathematician/Statistician, Henrik is a seasoned Global Pharma Executive. His career spans Novo Nordisk, Sanofi and CSL Vifor, excelling in RD, Regulatory, Medical Affairs, Pricing and Market Access. Currently Head of Evidence Generation at CSL Vifor, he chairs the Phase Four Research Board and is integral to the Senior Leadership Team.

Opinions are his own and don’t represent CSL Vifor as a company.


What's on the Agenda?

  • Intro (Laura Dosch)
  • Challenges and opportunities in clinical development and post-approval phases for rare diseases
    • Case study in ANCA-Associated Vasculitis and a discussion on gaps in QoL data and outcomes (Domenico Merante)
    • Real-World Evidence / Real-World Data (Phase IV) with historical examples and personalized treatments (Henrik Schou)
  • Where are we today and final remarks (Domenico Merante and Henrik Schou)
  • Discussion and networking (all)
  • Wrap-up (Laura Dosch)

Your Takeaways


A transformative perspective on leveraging technology and evidence-based strategies to revolutionize rare disease management.


Practical examples from the fields of rare and life-threatening diseases, based on historical examples. 


Talk to other industry professionals and find out how they are tackling challenges similar to yours.


The Digital Platform for Innovative Clinical Trial Execution.

Climedo offers a digital health platform for hybrid clinical trials and observational studies. Its easy-to-use, modular and secure solutions for data management include electronic data capture (EDC), ePRO, eCOA, and Telemedicine.

This enables pharma and medtech companies to validate their medical innovations more efficiently in the post-market phase and to capture data in decentralized, real-world settings. As a result, they accelerate studies, save costs, and improve data flow and quality, while fostering innovative trial designs.

By connecting all stakeholders (industry partners, study sites, physicians and patients) in one cloud-based system, Climedo is revolutionizing clinical research and making trials more accessible and patient centric. 

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