Contact us
Reach us worldwide
CANADA
Niemann-Pick Canada
Cheryl Marcogliese
Sandy Cowie
UNITED STATE OF AMERICA (3 associations)
National Niemann Pick Disease Foundation (NNPDF)
Elizabeth Heinze
Wylder Nation Foundation
Steven Laffoon
Firefly Fund
Pam Andrews
BRAZIL (2 associations)
Associação Niemann Pick Brasil – ANPB
ANPB - Associacoa NIemann-Pick Brasil
Rejane Machado
Niemann Pick B R-S
Claubia Viegas Bender
ARGENTINA
Associacion Niemann-Pick de Argentina
Marcelo Minotti
SPAIN (3 associations)
Fundación Niemann-Pick de España (FNP)
Carmello Fernández
Asociación Niemann-Pick Fuenlabrada (ANPF)
Salud Guerra Vega
ASMD España
Daniel de Vicente
Sara de Vicente
UNITED KINGDOM
Niemann-Pick UK (NPUK)
Toni Mathieson
Jackie Imrie
FRANCE (2 associations)
Vaincre Les Maladies Lysosomales (VML) FRANCE
Zehra Zakiuddin
zakiuddin.iliasse@aliceadsl.fr
Niemann Pick France
Luigi Antonio Roberto Distefano, CEO
BELGIUM
BOKS (Belgische Organisatie voor kinderen
en volwassenen met een stofwisselingsziekte)
Wim Porto-Carrero
THE NETHERLANDS
Volwassenen Kinderen en Stofwisselingsziekten (VKS)
Kim Mol
NORWAY
Niemann Pick Foreningen i Norge
Facebook Niemann Pick i Norge
Siri Skollerud-Blegen
siriskollerud@yahoo.com
GERMANY
Niemann-Pick Selbsthilfegruppe Deutschland e. V.
https://niemann-pick-selbsthilfegruppe.de/
info@niemann-pick-selbsthilfegruppe.de
Sara Ströeer
Lisa Tauszig
CROATIA
Niemann-Pick Hrvatska Napravite donaciju za
podrsku nosoji misiji I zajednici Niemann-Pick bolesti
Diana Takač
ITALIA
Associazione Italiana Niemann Pick Italy
Alberto Lionello
TUNISIA
Association Tunisienne des Maladies lysosomales
ATML - Association Tunisiennee des Maladies Lysosomales
Ines Bejaoui
Mouadh Saaied
POLAND
Stowarzyszenie Chorych na Chorobe Niemanna Picka I
Choroby Rzadkie (Niemann-Pick and Rare Diseases
Association Poland)
https://stowarzyszenie-niemannapicka.org.pl/
Barbara Winiarska
Lukasz Rybowski
PAKISTAN
Lysosomal Storage Disorders Society Pakistan
(LSDS) (associate member)
Atif Ejaz Qureshi
INDIA
Niemann-Pick India Charitable Trust
Navintara Kamath
CHINA
China Niemann Pick
Disease Association
President Aijun Zhang
Jasmine Zhang
TAÏWAN
Taiwan Foundation for
Rare Disorders (TFRD)
My Wu
AUSTRALIA
Australian NPC
Disease Foundation
Mandy Whitechurch
(Founder and President)
Deanna Carpino
(General Manager)
ARGENTINA ↓
Associacion Niemann-Pick de Argentina
NP-Argentina.org
info@npcargentina.org
Marcelo Minotti
mminotti@gmail.com
npcargentina@gmail.com
AUSTRALIA ↓
Australian NPC Disease Foundation
Niemann Pick C | ANPDi
info@npcd.org.au
Mandy Whitechurch (Founder and President)
mandy@npc.org.au
Deanna Carpino (General Manager)
deanna@npc.org.au
BELGIUM ↓
BOKS (Belgische Organisatie voor kinderen en volwassenen met een stofwisselingsziekte)
boks.be
Wim Porto-Carrero
wimportocarrero@gmail.com
BRAZIL ↓
Associação Niemann Pick Brasil – ANPB
ANPB – Associacoa NIemann-Pick Brasil
Rejane Machado
rejanemsmachado@gmail.com
Niemann Pick B R-S
Niemann Pick B R-S
Claubia Viegas Bender
claubia_bender@hotmail.co
CANADA ↓
Niemann-Pick Canada
niemannpickcanada.org
Cheryl Marcogliese
cherylmarcogliese@outlook.com
Sandy Cowie
sandy.cowie@inpda.org
CHINA ↓
China Niemann Pick Disease Association
chinanpd@sina.cn
President Aijun ZhangJasmine Zhang
CROATIA ↓
Niemann-Pick Hrvatska Napravite donaciju za podrsku nosoji misiji I zajednici Niemann-Pick bolesti
https://nphr.hr/
niemannpickhr@gmail.com
Diana Takač
diaana@gmail.com
FRANCE ↓
Vaincre Les Maladies Lysosomales (VML)
vml-asso.org
scientifique@vml-asso.org
Zehra Zakiuddin
zakiuddin.iliasse@aliceadsl.fr
Niemann Pick France
www.niemannpick-france.com
Luigi Antonio Roberto Distefano, CEO
president@niemannpick-france.com
GERMANY ↓
Niemann-Pick Selbsthilfegruppe Deutschland e. V.
https://niemann-pick-selbsthilfegruppe.de/
info@niemann-pick-selbsthilfegruppe.de
Sara Ströeer
sara.stoeer@web.de
Lisa Tauszig
lisa.tauszig@yahoo.com
INDIA ↓
Niemann-Pick India Charitable Trust
https://niemannpickindia.com/
niemannpickindia@gmail.com
Navintara Kamath
navintara@gmail.com
ITALY ↓
Associazione Italiana Niemann Pick Italy
niemannpick.org
info@niemannpick.org
Alberto Lionello
lionello.alberto@niemannpick.org
THE NETHERLANDS ↓
Volwassenen Kinderen en Stofwisselingsziekten (VKS)
stofwisselingsziekten.nl
info@stofwisselingsziekten.nl
Kim Mol
kimr.mol@gmail.com
NORWAY ↓
Niemann Pick Foreningen i Norge
Facebook Niemann Pick i Norge
Siri Skollerud-Blegen
siriskollerud@yahoo.com
PAKISTAN ↓
Lysosomal Storage Disorders Society Pakistan (LSDS) (associate member)
www.lsdpk.org
atif@lsdpk.org
Atif Ejaz Qureshi
atiblue@yahoo.com
POLAND ↓
Stowarzyszenie Chorych na Chorobe Niemanna Picka I Choroby Rzadkie (Niemann-Pick and Rare Diseases Association Poland)
https://stowarzyszenie-niemannapicka.org.pl/
Barbara Winiarska
b.winiarska@uthrad.pl
Lukasz Rybowski
Lukasz.rybowski@interia.pl
SPAIN ↓
Fundación Niemann-Pick de España (FNP)
fnp.es
Carmello Fernández
presidencia@fnp.es
Asociación Niemann-Pick Fuenlabrada (ANPF)
anpf.es
Salud Guerra Vega
asociacionniemannpick@anpf.es
ASMD España
asmd.es
Daniel de Vicente
presidente@asmd.es
Sara de Vicente
secretaria@asmd.es
SWITZERLAND ↓
NPSuisse
http://www.npsuisse.ch/
Christoph Poincilit
christoph.poincilit@inpda.org
TAIWAN ↓
Taiwan Foundation for Rare Disorders (TFRD)
TFRD Home (tfrd2.org.tw)
tfrd@tfrd.org.tw
My Wu
ms09@tfrd.org.tw
TUNISIA ↓
Association Tunisienne des Maladies lysosomales
ATML – Association Tunisiennee des Maladies Lysosomales
Ines Bejaoui
ines_bejaoui@hotmail.com
Mouadh Saaied
saaied.mouadh@gmail.com
UNITED KINGDOM ↓
UNITED STATE OF AMERICA ↓
National Niemann Pick Disease Foundation (NNPDF)
nnpdf.org
nnpdf@nnpdf.org
Elizabeth Heinze
eheinze@nnpdf.org
Wylder Nation Foundation
https://wyldernation.org/
Steven Laffoon
steven@wylderNation.org
Firefly Fund
fireflyfund.org
Pam Andrews
pam@fireflyfund.org