EURORDIS Membership Meeting 2011 Amsterdam, Saturday, 14th of May in University of Amsterdam 3

1. Workshop Training, Information
and Education of MDs
EURORDIS Membership Meeting 2011
Amsterdam, Saturday, 14th of May in
University of Amsterdam 3

2. Programme
Presentations
• Feedback from the 15 National Conferences, Christel Nourissier,
Eurordis
• Training package on RD for medical students, Bernd Quadder,
German Sarcoidosis Association
• Case Study: Italian Training for MDs, Renza Galluppi, UNIAMO
• Sharing expertise: transfer of experience from patient organizations
to doctors and between PO, Rainald von Gizycki, Retina Europe
Discussion:
• How can training of MDs and medical students be integrated into
NPs,? Which NP measures will influence MDs in such a way that
the lives of people with a RD will be improved, i.e. shorten
diagnosis, better treatment, better understanding etc.?

3. Discussion
• What is missing in student and MD Training? Do we
need more knowledge on methodology or more fact
knowledge on diseases? What kind of methodology?
• Would more awareness shorten the route to diagnosis
or improve treatment? How should awareness be
improved?
• Do MDs need a better acceptance of fallibility? Do we
need a change in culture (for MDs and patients) that
the doctor cannot know it all?
• How can the medical community benefit from the
special expertise of PO?

4. Conclusions
• Methodology, knowledge of available tools (orphanet, information
centres, hotlines, existing centres of expertise and E-Health-
Networks), awareness of the uncommon and acceptance of one‘s
limitations as well as the importance of team work are the key to success
(right diagnosis and best treatment).
• Patient Organisations have unique knowledge on their disease. MD would
benefit from CME in cooperation with PO.
• Training of (para)medical specialists is necessary on different levels.
Guidelines for care are very important.
• Training should start at university and continue during professional life
(continued education)
• Key issues of training are: learn (1) how to doubt, (2) how to work
interdisciplenary, (3) not to forget the social aspects, (4) how to
communicate a diagnosis, (5) how to find the right information , i.e. the
MD has to move „from the knowledge of the disease to the knowledge of
the patient“.

5. Measures (1)
• Measures to promote information (e.g. Orphanet) and increase
awareness with the public at large and (para)medical professionals
in particular must be boosted, e.g. by campaigns and events.
• At least one 2-hour course on RD for students to enhance
awareness on the existence of RD
• Training on RD should start in university and be part of continued
medical education (CME)
• By using Orphacode and crossreferencing with ICD-10 RD should be
made more visible in health care system, also before ICD-11 is
adopted.
• PO know about patient needs and deficits in patient care. They can
contribute to improving the medical training. PO should be
(financially as well as politically ) supported to develop commmon
tools , transfer circles and disease orientated materials/lectures
etc. in order to contribute to MD Education.

6. Measures (2)
• Training quality should be systematically evaluated on the
basis of outcome indicators.
• Training should be differentiated for GPs and specialized
doctors.
• Innovative training by online lectures and the like could
contribute to better access, availability and quality of
training.
• Development/Strengthening of diagnostic tools to assist
MDs in referal process towards the right diagnosis (to be
confirmed by specialist)
• Addressing the transferral from paedetrician to GP – teach
paedetricians how to inform GPs (and also ensure that the
health care system supports this transferral)