| WORKSHOP DESCRIPTIONS |
All workshops are designed to provide useful information to patient advocates and to allow the exchange of ideas, best practices and experiences across countries, with or without national strategies. Patient representatives who have participated in National Conferences are invited to take an active part in the discussion and share the ideas and solutions discussed at the conferences they attended.
Here is a brief overview of the capacity-building workshops taking place during the EURORDIS Membership Meeting. This information should help you to select the workshop(s) you would like to attend at the Meeting.
NEWBORN SCREENING
This full day workshop is run in partnership with the Newborn Screening project of ISS & International Society of Neonatal Screening.
Newborn screening is an important topic in the Council Recommendation on Rare Diseases and in National Plans. In this workshop, participants will be asked to express their views on the present practices in neonatal screening across Europe and to comment on what should be the future policies in this area and how newborn screening can be part of a national plan for rare diseases.
This full day workshop will focus on:
- The EU tender on Newborn Screening for rare disorders in Europe
- Organisation and practice of neonatal screening in Europe
- Survey on European newborn screening programmes: interaction between newborn screening laboratories, confirmatory diagnostic services and treatment units
- Patients involvement in newborn screening and practices
- Governance of the European newborn screening systems. What framework for future newborn screening policies in the EU?
- Panel discussion with the audience about issues raised by the above presentations and on the following two topics:
a) Possible European Policy in an International Framework
b) Recommendations for National Plans and Strategies for Rare Diseases CENTRES OF EXPERTISE AND NETWORKS OF EXPERTISE
This session in run in collaboration with EU CERD.
Centres of Expertise (CoE) and European Reference Networks are a pillar of the Council Recommendation and national strategies on rare diseases. This session will revisit the basic concepts and will discuss the quality criteria reviewed by the EU CERD for CoE and define the best possible approach according to the size of the country population and the organisation of health care pathways by therapeutic areas. The discussion on CoE is also timely given the recent adoption of the Directive on Cross Boarder Healthcare which will provide the legal instruments to implement such European reference networks for RD in the coming years. This workshop will discuss how to use and implement the concept in the development of National Plans for Rare Diseases.
This half day workshop will specially focus on:
- Presentation of the concept, definitions and terminology
- EURORDIS Policy recommendations based on EURORDIS Declaration, Fact sheets and Position Papers
- Feedback from the 15 National Conferences on Centres of Expertise
- Discussion with the audience around key questions:
1) Difference of strategy according to country size
2) Organisation of health care pathways by therapeutic areas
3) How does this type of care impact patients in their everyday life?
4) Examples of good collaboration of CoE and Patient Organisations
5) Cross-boarder access
REGISTRIES
This session is run in collaboration with the Epi-Rare project.
Registries are an essential part of the Council Recommendation on Rare Diseases and of existing and future National Plans. The former EU Rare Disease Task Force and EPPOSI have already done a great deal of work on this topic, and now, with the EPI Rare project, patient organisations will be involved over 30 months in the process of defining best practices and policies for registries. This workshop aims at sharing experience and comparing different sorts of registries (disease specific, group of diseases, national, etc.) evaluating the outcomes of the EuroPlan conferences and elaborating recommendations for National Plans.
This half day workshop will run in the morning and again in the afternoon and will focus on:
- Presentation of the concept, definitions and terminology (based on EURORDIS fact sheet)
- Outcome of the RD Task Force and EPPOSI Workshop on registries
- Presentation of the Epi-Rare project
- Feedback from the 15 National Conferences on registries
- Panel discussion on possible policy recommendations
RESEARCH
This session is run in collaboration with E-Rare.
EURORDIS has produced a Fact Sheet on Research as well as a reference paper entitled "Why RD Research?" that will be presented, along with surveys on the role of patient organisations in research and trends and determinants of RD research. Based on this information, a second reflection paper on Research will be discussed with the participants, which will contribute to the development of recommendations on research for National Plans.
This half day workshop will focus on:
- EURORDIS Research Policy recommendation
- Results of survey on the role of Patient Groups in Research and their priorities for the future
- Presentation of the RD Platform fact finding study on the determinants of rare disease research
- Feedback from the 15 National Conferences on Research Policy
- Discussion of the EURORDIS second Reflection Paper on Research based on key questions
BRAINSTORMING AND POLICY DEVELOPMENT SESSION: SOCIAL ASPECTS
Social Aspects have been much discussed at EuroPlan conferences and form an important part of National Strategies. The future Joint Action on Rare Diseases (JARD) will integrate specialised social services and integration of rare diseases into existing and future social policies and services at EU level. This brainstorming session will discuss how best to integrate social aspects into national strategies.
This half day workshop will focus on:
- Feedback from the 15 National Conferences on social aspects
- Presentation of Social Challenges of RD patients in the Joint Action on Rare Diseases
- Discussion: What are the social aspects discussed in the context of National Plans? What are the actions planned to address social challenges of rare disease patients? What is the added value of a European action?
BRAINSTORMING AND POLICY DEVELOPMENT SESSION: TRAINING, INFORMATION AND EDUCATION OF MEDICAL DOCTORS
The training of medical doctors and other healthcare professionals is a new hot topic that emerged from the 15 EuroPlan conferences. Some experience has been gained by patient organisations directly involved in the training of medical students as part of university degrees or of continuing medical education. This brainstorming session will try to find a way of placing the training of medical professionals into national strategies.
This half day workshop will focus on:
- Feedback from 15 National Conferences
- Training package on RD for medical students
- Case Study: Bulgarian Training for MDs
- Sharing expertise: transfer of experience from patient organisations to doctors and between patient organisations
- Discussion: How can the training of MDs and medical students be integrated into National Plans?
BRAINSTORMING AND POLICY DEVELOPMENT SESSION: PREVENTION
This workshop is run in collaboration with the International Federation for Spina Bifida and Hydrocephalus
Prevention is another rather new topic on the Rare Disease agenda that has not yet found its place in national strategies. However, there is more than one Rare Disease for which prevention strategies are possible! We hope this first meeting on prevention will prompt discussions on the scope and specific measure on prevention to be integrated into National Plans.
This half day workshop will focus on:
- Presentation of the International Federation for Spina Bifida and Hydrocephalus' primary prevention study
- View of a national organisation on the aspect of Prevention
- Presentation of the Eurocat study on prevention of Congenital Anomalies
- Prevention in the Spanish National Plan for Rare Diseases
- Discussion : Howcan Prevention be integrated into National Plans?
- How to identify other diseases where prevention is possible. How to gather more information.
