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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