miércoles, 22 de julio de 2020

30th EURORDIS Round Table of Companies Workshop - EURORDIS - The Voice of Rare Disease Patients in Europe

EURORDIS - The Voice of Rare Disease Patients in Europe

Eurordis, Rare Diseases Europe

EURORDIS ROUND TABLE OF COMPANIES



30th EURORDIS Round Table of Companies Workshop


Newborn Screening: Shaping the future

ONLINE Thursday, 15 October 13:00-18:00 and Friday 16 October 2020 13:00-17:00


Programme

This workshop will provide valuable information to its participants with the following objectives:
  • Understand the Newborn Screening decision-making processes and gain insight about diverse national approaches
  • Discuss the ethical, social and economic ramifications of the advancing landscape of Newborn Screening in light of new technologies 
  • Gain insight into the impact on patients and families of current Newborn Screening programmes
  • Discuss and refine the draft position statements from the EURORDIS Working Group on Newborn screening
  • Learn how the rare disease community can support the advocacy of Newborn Screening

Registration

Registration for the 30th ERTC Workshop will open shortly!
  • ERTC members will receive an email with the link to register
  • If you are a patient or patient advocate and you wish to take part, please contact Martina Bergna <martina.bergna@eurordis.org>
This event is recommended for the following target audience:
  • Pharmaceutical and biotech representatives with expertise in:
    • Medical Science, Medical & Innovation, External Science & Partnering, Medical Ethics   
    • Legal & Compliance Affairs
    • Regulatory Affairs
    • Health Economics, Health Technology Assessment (HTA)
    • Patient Advocacy, Public Affairs, Patient Engagement, Patient Partnership, Patient Support
    • Data protection (GDPR), Data Sharing and Storage
  • Biobanks and certification labs for Newborn Screening
  • National Newborn Screening Programme Leaders and Coordinators / Policy makers
  • National Newborn Screening Advisory Committee Members
  • Rare disease patient representatives engaged in Newborn Screening pilots or interested in this topic

Questions:

Please send any questions concerning registration to Martina Bergna at: martina.bergna@eurordis.org

We look forward to welcoming you to the EURORDIS Round Table of Companies.

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