REPORT 2002 2006

1
REPORT2002 - 2006
WANDA seeks a world in which neuromuscular
disorders are understood and eradicated and in
which the people affected are well supported.

• Ysbrand Poortman
• Vice president WANDA

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REPORT2002 - 2006

• BOARD

President    Piraye Serdaroglu
Istanbul Turkey      Vice Presidents    Hisano
bu Kaiya Kyoto Japan Asia Allan Bretag
Adelaide South Australia Australasia Alex
MacKenzie Ottawa Canada N. America Lee Leith
Cape Town South Africa M. S. Africa Ysbrand
Poortman Baarn The Netherlands Europe Mayana
Zatz San Paulo Brazil S.America Ekrim Abd
el Salam Cairo Egypt N.Africa ME
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REPORT, 2002 - 2006

• .

Objective 1 facilitate cooperation between
national associations
Websites www.worldmuscleforum.org www.wandaweb
.org Meetings Vancouver, Kusadasi, Rio,
Istanbul, (Naples) Database 130 NMDAs
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REPORT, 2002 - 2006

• Objective 2 (a)
• work towards a cure and eradication of the
  disorders

Promoting activities ENMC,WMS, MSM, GCA, Q
IC-NMD, Supporting NMD spec. groups (IPA)
Participation in other global initiatives IGA
Int. Genetic Alliance Parent/patient
organisations IAPO Int. Alliance
Patient Organisations (?) WAO World
Alliance Prevention Treatment BioVision
Global Life Sciences Forum (Lyon) Founding (in
process) International Rare Disorders
Forum Int. Platform Paed. Drug
Development. Int. Forum Good Clinical Practice
Communication WHO, UNESCO, UNICEF
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REPORT, 2002 - 2006

• Objective 2 (b)
• work towards a cure and eradication of the
  disorders

• ROADMAP TO TREATMENT
• WANDA- project adopted in Vancouver 2002

Streamlining the pathways to treatment
Expliciting role patient/parent groups
Associations for NMD for drug debelopment
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REPORT, 2002 - 2006

• Objective 2 (c)
• work towards a cure and eradication of the
  disorders

Pompe SMA as models Pompe!!!
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REPORT, 2002 - 2006

• Objective 3
• to encourage the formation of new NMD-
  associations

Via websites www.wandaweb.org www.worldmusclefor
um.org Internet Information kit
Algeria, China, Nepal, Lebanon, Various
African South American countries Former USSR
countries Gulf States Marocco
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Algeria
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Roumenia
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REPORT, 2002 - 2006

• Objective 4
• to facilitate swift dissemination of information
  on treatment and research findings

Database NMDAs NMD spec. groups Ref. to
qualified other agencies with news section such
as ENMC, WMS, AFM, MDAA Peter Law case
(negative info) myoblast transfer
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REPORT, 2002 - 2006

• Objective 5
• representation

WCAF WANDA- Gaetano Conte Academy
Forum IGA Int. Genetic Alliance
parent/patient organisations WAO World
Alliance Prevention Treatment BioVision Global
Life Sciences Forum (Lyon) IAPO Int.
Alliance of Patient Organisations (??) Planeton
???? Partenering in founding Int. Rare
Disorders Forum Int. Platform Paed. Drug
Development. Int. Forum Good Clinical Practice
Meetings WHO, UNESCO, UNICEF
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IGA/ WANDA IN LYON
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Founding of IGA in the presence of Science and
Industry representatives, Lyon, France 2003
BIOVISION
World Life Sciences Forum
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REPORT, 2002 - 2006

• 2006 2010
• focus on
• information communication
• website(s), meetings
• roadmap to treatment
• publication
• streamlining the path ways
• database
• encouraging new NMDAs
• awareness fundr. campaign (??)