EURORDIS Membership Meeting next week (12-14 May)!

The online event platform will open HERE at 11.00 CET on Monday, 10th May. 
You’ll be able to explore the content, visit the resource centre, take a selfie to share on social media and search the list of participants before the beginning of the event.

 

PRE-READING MATERIAL

In preparation for the meeting, please find below some useful pre-reading material:

• Meeting Agenda
• Speakers Bios

Plenary Session

• Rare2030 Final Recommendations
• The Rare 2030 Knowledge Base Summaries

Workshop 1

• European Patient Advocacy Groups (ePAGs) – Introductory video on ERNs

Workshop 2

• ECRD learning and recommentations
• Speaker guidelines

Workshop 3

• UHC Advocacy and Rare Disease

Workshop 4

• Key principles for Newborn Screening
• RARE IMPACT EU Report: “Challenges and solutions for improving patient access to advanced therapies medicinal products at the European Union level”

Breakout 1:

• Rare 2030 Recommendation number 8, available here at page 111

Breakout 2:

• Key principles for newborn screening: A EURORDIS position paper (January 2021)
• European Alliance for Newborn Screening in SMA, Spinal muscular atrophy: Screen at birth, save lives (Whitepaper version 1, 26 March 2021)

Breakout 3: 

• Recommendations to achieve a mature ERN system in 2030 
• Best practice. Taking action at national level: Connecting patient organisations to Centres of Expertise by means of a legal role in the designation process (documents below in Dutch but translatable into English using your browser):
  • Letter from the minister of health to the parliament (including several other actions in the field of rare diseases)
  • Related publication in the ‘Staatscourant’
  • Related publication on the ministry of health’s website
  • Instructions (VSOP website) for patient organisations on how to assess the CoEs (and several other related webpages).

• Best practice. Taking action at European Level:
  • Improving access to care and treatment for Huntington’s Disease patients and families

 

If you need assistance before or during the event please do not hesitate to contact me at [email protected].

Looking forward to seeing you online very soon!