General
WANDA chooses bi annually a specific NMD and an issue bound subject.
WANDA has focust on Pompe disease and SMA and focussed on epidemiology.
Towards NMD- specific diseases WANDA aims at
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furthering their position within the neuromuscular
setting |
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developing a system of communication on the
international level of these NMD-specific groups. |
In this context WANDA, in collaboration with the
Gaetano Conte Academy Forum, raises awareness for this disease,
works on an analysis of the strong and weak points, develops a strategy
on the road from diagnosis to therapy and, as far as asked for,
support these groups in their development to a strong international
group.
Due to its specific position as international body with extensive
networks and expertise in reach, WANDA is in an excellent catalysing
position to initiate, stimulate or contribute to coherence, scaling
up, coordination and collaboration in new, neglected or cross border
areas.
Following the decision of the Kyoto assembly in 1994 WANDA takes
up two priorities: disease specific and issue bound.
Pompe
The first WANDA-focus disease was Pompe disease, an acid maltase
deficiency. Workshops were organised in the Netherlands (by VSN)
and in Australia (by MDASA). There were communications with researchgroups
and industries. The International Pompe Association is now a strong
and independent NMD- specific patient/parent group which serves
as a model for other groups. Their communication and collaboration
with industry is exemplary.
See www.worldpompe.org
and more specific www.worldpompe.org/about.hml
and view "1st conference".
SMA
In this context WANDA organised workshops and conferences in Capri,
Corfu and Vancouver. see for report www.worldmuscleforum.org/world-forum/activities/conferences-and-meetings.htm
Together with the European SMA- taskforce a strategy has been developed
which gives an overall picture of the various research avenues which
potentially could lead to a therapy.
Epidemiology
WCAF organised in Corfu, 23 May 2002 an International Workshop on
"approaches in epidemiology of neuromuscular diseases"
The meeting was chaired by Prof. L. Comi (GCA) and Ysbrand Poortman
(WANDA).
WANDA underpins the role which NMDAs can play often having records
of their members.
The Dutch association for NMD provides annually data about the numbers
of members involved in a NMD per diagnosis.
Click here for details 
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