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

Final Programme

Concept paper

Presentations

This document is password protected. 

 

Newborn Screening (NBS) is a comprehensive system that includes multidimensional components, including testing, diagnosis, communication of information to parents, follow up care and storage of samples for secondary use. Recent and continued scientific and technological advancements have opened up the discussion on the expansion of NBS programmes to include rare diseases that could be screened using new sequencing techniques.

This workshop will explore the potentials and limits of current Newborn Screening approaches, implications of expanding Newborn Screening programmes and current issues surrounding tests used to detect rare diseases in NBS programmes and their implications.

The 30th EURORDIS Round Table of Companies Workshop is your opportunity to help us validate and refine the position statement on NBS to be released later this year. Using your evidence-based arguments, experience, concrete examples and feedback relating to Newborn Screening programmes, this is your chance to make a valuable contribution to this important statement that will be broadly disseminated by EURORDIS Newborn Screening Working Group to advocate for harmonised criteria and adequate policies for newborn screening to be uniformly applied across Europe.

 

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 is now open!

  • ERTC members have received an email with the link to register
  • If you are a patient, patient advocate or healthcare professional 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

 

Preparation Materials: 

ECRD Session 0102 - Newborn Screening: Now and in the Future

 

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.

 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases