International Links, Information and Resources
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| (Please note the Google language translator box in the left margin of each Web page) | |||||
Niemann-Pick Disease Organizations Around the World
- International Niemann-Pick Disease Alliance (INPDA)
- Canadian Chapter of NNPDF (Canada)
- Niemann-Pick Disease Group (UK)
- Australian NPC Disease Foundation, Inc. (Australia)
- Vaincre Les Maladies Lysosomales (France)
- Niemann-Pick Selbsthilfegruppe (Germany)
- Niemann-Pick Disease Type C of Japan (Japan)
- Fundacion Niemann-Pick de Espana (Spain)
- Associazione Italiana Niemann Pick (Italy)
- Asociason Niemann Pick de Argentina (Argentina)
- Volwassenen Kinderen en Stofwisselingsziekten (Netherlands)
- China Niemann-Pick Disease Association http://blog.sina.com.cn/chinanpd (China)
- Ara Parseghian Medical Research
Foundation (United States)
- 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 - trojan@kielce.msk.pl
(Jerzy does not speak English but can get messages translated)
- Other resources and links addressing
Niemann-Pick Disease
- Organizations addressing lysosomal 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 2009. 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.
The formation of the International Niemann-Pick Disease Alliance (INPDA) came about as a result of this meeting.
The INPDA held its second in-person meeting in Spain in November 2011. INPDA meetings were held
between the 2009 and 2011 gatherings via conference call.International Niemann-Pick Disease Alliance
Second NPD International Advocacy Meeting Held in Spain
The International Niemann-Pick Disease Alliance (INPDA) met November 13-14, 2011, in Toledo, Spain, to share updates and to reinforce and develop worldwide networks.
Representatives from patient support groups representing 11 countries (including those from the NNPDF and CCNNPDF) and pharmaceutical companies, along with clinicians and scientists from around the world, were in attendance.
New goals and objectives for the INPDA were set for the next two years with an emphasis on collaboration of family services and research.
The INPDA was established in 2009 to provide a forum for the exchange of information, experience and knowledge for the purpose of accelerating progress in the fight against Niemann-Pick Disease.
For more information about the INPDA, visit the Alliance's Web site at: http://inpda.org
[Nov 10, 2009 mem; Jan 17, 2012 mem; Apr 6, 2012 mem]