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

Draft programme

Concept paper

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.

 
 
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rareRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases