International Links, Information and Resources
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(Note the Google language translator box in the left margin) |
Niemann-Pick Disease Organizations Around the World
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Canadian Chapter of NNPDF
(Canada)
CCNNPDF to host 2010 Family Support & Medical Conference - August 5 - 8, 2010
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Niemann-Pick Disease Group
(UK)
NPDG (UK) Annual Family Conference - September 10 - 12, 2010, Wyboston Lakes
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Australian NPC Disease Foundation, Inc.
(Australia)
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Vaincre Les Maladies Lysosomales
(France)
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Niemann-Pick Selbsthilfegruppe
(Germany)
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Fundacion Niemann-Pick de Espana
(Spain)
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Associazione Italiana Niemann Pick
(Italy)
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Asociason Niemann Pick de Argentina
(Argentina)
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Volwassenen Kinderen en Stofwisselingsziekten
(Holland)
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Ara Parseghian Medical Research
Foundation
(United States)
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Stowarzyszenie Charych na NPC i choroby pokrewne (Poland)
(Association of Patients Affected by NPC and Related Diseases)
Ul. Malikow 74
25-639 Kielce
Poland
Jerzy Szydlowski - Tel 602-622-705 - [email protected]
(Jerzy does not speak English but can get messages translated)
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Other resources and links addressing
Niemann-Pick Disease
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Organizations addressing lysosome storage diseases
The First International Meeting of Niemann-Pick Disease Non-Profit Organizations
October 2009
ScotlandThe First International Meeting of Niemann-Pick Disease Non-Profit Organizations was held in Scotland in October. The meeting was jointly organized and sponsored by the NNPDF and the Niemann-Pick Disease Group (UK).
Ten NPD advocacy groups from around the world were in attendance, with a focus on enhancing communication and collaboration among organizations supporting those with NPD around the world. The meeting allowed participants to explore ways to share information and to speed up progress in care and the understanding of Niemann-Pick Disease.
Such global collaboration helps maximize efforts and avoid duplication of work in good stewardship of hard-earned resources. This International Meeting marked an important advance in worldwide cooperation in the fight against NPD.
[Nov 10, 2009 mem]