Following the objectives
of the alliance
| a. |
to support initiatives for establishing
new NMDAs in countries without |
| |
 |
info kit was produced for starting NMDAs,
|
|
new contacts were linked with existing
NMDAs in neighbouring countries |
|
personal advise and encouragement |
|
| b. |
facilitate cooperation between existing
NMDAs |
| |
|
various meetings and workshops were
organised in conjunction with other conferences (Adelaide,
Amsterdam, Capri, Corfu, Istanbul, Johannesburg, Naples,
Vancouver, Washington) |
|
information exchange via website and
meetings |
|
three news letters were issued and dissiminated,
click here 
for the latest issue. Other editions are available at
the secretariat. |
|
| c. |
to develop strategies for better care
and treatment
To realise this goal a joint venture has
been arranged with the Gaetano Conte Academy in Naples which
led to the establishment of the WANDA- Conte Academy Forum.
See www.worldmuscleforum.org
Moreover WANDA focussed on the following issues which led
to workshops, publications and presentations.
|
role of international disease specific
groups
policypaper discussed during the 4th quadriennial meeting
in Vancouver in 2002 |
|
communication and collaboration with
global fora and institutions such as BioVision, Global
Life Sciences Forum, |
|
development of policy regarding "pathways
to therapy" (for summary click here
) |
|
translational researchscientific satellite
workshop during the quadrennial international NMD- congress
in Vancouver in 2002 |
|
session WANDA assembly in Vancouver
in 2002 |
|
dismantling of false hope treatments
see special circular |
|
| d. |
representation and participation in events
on the international level
Activities includes communication with and/or participation
in events of the following international institutions and organisations
|
WMS |
World Muscle Society |
|
|
IC-NMD |
International Congress Committee NMD |
|
|
ENMC |
European Neuromuscular Centre for the
coordination and stimulation of international research |
|
|
Gaetano conte |
Gaetano Conte Academy |
|
|
MSM |
Mediterranean Society for Myology |
|
|
IAPO |
International Alliance of Patient Organisations |
|
|
IGA |
International Genetic Alliance of Parent Patient organisations |
|
|
WHO |
World Health Organisations dep. non
communicable diseases |
|
|
BioVision |
The World Live Sciences Forum |
|
|
WAO |
World Alliance Organisations for Prevention and Treatment of Genetic and Congenital Conditions |
|
|
Assemblies
| 1990 |
Munich |
| 1994 |
Kyoto |
| 1998 |
Adelaide |
report assembly1998 |
 |
| 2002 |
Vancouver |
report assembly 2002 |
|
| 2006 |
Istanbul |
report assembly 2002 - 2006 |
|
| |
|
report WANDA congress |
|
| 2010 |
Naples |
Announcement assembly |
|
|
