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.

 
 
La voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases