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

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.

 
 
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