| Motives: |
| |
|
 |
great
demand for: |
| |
|
coherent
accurate and reliable information |
| |
|
specially
on treatments |
|
available
information is fragmented |
|
fast
developments in many areas |
|
increasing
role of parent/patient organisations |
|
increasing
number of new disciplines involved in NMD |
|
many
niches such as gap between researchers and patient groups |
|
need for coordination, promotion and implementation |
|
increasing
interest in: |
| |
|
strategic
and political issues |
| |
|
policy
development |
| |
|
communication
and dialogue on hot topics |
|
special
needs in developing countries |
| |
|
| Objectives:
|
|
|
| A. |
to
create a reliable link between families, parent/patientorganisations,
doctors and scientists following a defined policy program |
| B. |
to
advise emerging and young NMDAs |
| C. |
to
facilitate coordination and cooperation between organisations
and (research) groups working directly and indirectly for the
benefit of people involved in NMD |
| D. |
to
promote existing activities and strengthen new initiatives within
the framework of the policy program |
| E. |
to
encourage the functioning of continental and global NMD-specific
groups within the context of the WANDA- policy plan |
| F. |
to
contribute to public awareness, education and empowerment |
| G. |
to
stimulate dialogue between all parties concerned |
| H. |
to
initiate policy making and strategic planning particularly in
regard to the development of effective therapeutic approaches
in NMD |
| I. |
to catalise activities in areas of specific interest such as
in the field of epidemiology and translational research |
| |
|
| Target
groups: |
| A. |
"organised"
patients and parents/families and also those who want to be
organised (starting NMDAs) |
| B. |
leading members of disease specific NMD-groups (family groups) |
| C. |
patients
& parents/families looking for info and support to refer
them to existing NMDAs or to support them in starting an NMDA |
| D. |
others |
| |
1. |
individuals
(doctors, researchers, teachers, students who wish to orientate
themselves in the field of NMD) |
| |
2. |
members
of (emerging) scientific groups specially in developing countries |
| |
3. |
NMD-
related groups |
