Eurordis - Rare Disease Europe

EURORDIS Membership Meeting (EMM) 2021

The EURORDIS Membership Meeting (EMM 2021) will take place online from 12 to 14 May, followed by the online General Assembly on 10 June 2021.

EURORDIS represents 962 rare disease patient organisations in 73 countries. The EURORDIS Membership Meeting is an excellent opportunity for patient organisations to interact with patient advocates, to learn from the best in the rare disease community, and to be exposed to the latest developments in rare disease advocacy.

Useful resources

• Meeting agenda
• Speakers’ bios
• List of participants

Workshop 1

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

Workshop 2

• Don’t forget to drop your own tips for making an online event engaging here! 
• ECRD 2020 learning and recommendations
• Speaker guidelines
• Budget template
• Session script
• Glossary: Suppliers of digital tools

Networking session/Soap box

• Addressing the challenges of diagnosis for a rare disease: How IPWSO is supporting diagnosis for people with Prader-Willi syndrome, Marguerite Hughes and Agnes Hoctor, IPWSO
• International patient registry on the effects of COVID-19 in people with rare diseases, Garrahan Hospital (Buenos Aires) and Sant Joan de Déu Barcelona Children’s Hospital
• Common challenges in uncommon conditions, Rosanne M. Smits and Chris Verhaak (Amalia Childrens Hospital, Radboudumc, Nijmegen, Netherlands)

Pre-reading materials

Before the meeting begins on Wednesday, May 12, we invite you to read the preparatory materials listed below:

Plenary session

• Rare 2030 Full Recommendations or Executive Summary
• The Rare 2030 Knowledge Base Summaries

Workshop 3

• UHC Advocacy and Rare Disease
• Rare 2030 Executive Summary

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”
• UNIAMO and PO’s Position Paper

Breakout 1:

• Rare 2030 Recommendation #8 (see 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