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Mehr Details: Rare Disease Action Forum - Early diagnosis for rare diseases

Rare Disease Action Forum - Early diagnosis for rare diseases

free Webinar - online,
29.03.2023, 17:00 - 18:30 Uhr

Zentrum für seltene Krankheiten| Seltenekrankheiten

This webinar on the diagnosis of rare diseases in Switzerland, focuses on challenges related to early diagnosis, access and reimbursement, and potential solutions to improve patient access to diagnosis.
The webinar is open to all stakeholders active in the rare disease field. It is free of charge and will be held in English.


  • Journey to diagnosis from the patients’ perspective: the presentation exlores what receiving a diagnosis of a rare disease means for patients and the impact of a late diagnosis and insights on how to find experts for diagnoses of rare diseases
  • Challenges in early diagnosis for healthcare professionals: the presentation provides perspectives on the rare disease reference centers, newborn screening, and the role of digitalization in rare disease diagnosis
  • Reimbursement of diagnostic tools: the presentation covers the framework for the reimbursement of diagnostic tools in Switzerland

Solutions to overcome the identified hurdles: the webinar will be concluded by a discussion with the speakers and the audience

Webinar-Registrierung - Zoom


  • Peter Löffelhardt I HOPOS
  • Nathalie Schober-Ladani I RDAF


  • Shayesteh Fürst-Ladani I RDAF
  • Susan Kuranoff I Global DARE Foundation
  • Marianne Rohrbach I Reference center for rare metabolic diseases, Children’s Hospital Zurich

If you have any questions you would like to see addressed during the webinar, please send them to by 15 March 2023.