Who we are
The International Niemann-Pick Disease Alliance (INPDA) is a global network of non-profit organisations working in the field of Niemann- Pick diseases.
In the 1990s, those diagnosed with NPD were often told they would never meet anyone else with the condition due to its rarity. However, patients, their families, and friends began forming support groups, connecting families, and rallying dedicated individuals to ensure that no family facing an NPD diagnosis would have to do so alone.
The INPDA was initially established in 2009 by 10 member organisations in an effort to accelerate progress and build collaborative networks. Since that time, the INPDA now has member organisations in more that 20 countries and is continuing to grow.
Where we are going
Today, the INPDA comprises an international network of non-profit groups that support patients and families living with Niemann-Pick diseases. This global community continues to grow every year. Despite language and cultural differences, INPDA members are united by a single aim: to improve outcomes for all those affected by Niemann-Pick diseases. By joining forces through the INPDA, we amplify the global voice for Niemann-Pick diseases and accelerate progress toward effective treatments and therapies.
The INPDA serves as a collaborative forum for sharing information and experiences related to all aspects of Niemann-Pick diseases. Registered in the UK as a charity and non-profit organisation, the INPDA helps facilitate the global exchange of mutual support, shared resources, opportunities, expertise, knowledge, and skills. The INPDA encourages collaborative and cross-sectional networks, with key projects driving global progress in Niemann-Pick disease awareness and research.
What we do
The International Niemann-Pick Disease Alliance (INPDA) is dedicated to accelerating progress in Niemann-Pick diseases worldwide. Through a robust network of , patient advocacy groups, healthcare professionals, and researchers we provide a collaborative forum for sharing information and experiences related to all aspects of Niemann-Pick disease, including care, support, information distribution, research advancement and more.
- Connect and strengthen patient advocacy leadership.
- Influence and facilitate global progress in research and therapy development.
- Encourage cross-sector collaboration.
- Promote best practice in care and support.
- Raise the voice of our community.
- Accurately represent the needs of the community.
- Provide expert patient experience and testimony.
- Contribute to the design and development of clinical trials and support recruitment.
- Support joint research and development opportunities.
- Support HTA and regulatory submissions.
- Raise awareness through targeted campaigns for both ASMD and Niemann-Pick Disease Type C.
- Advocate for access to approved therapies.
- Generate real world evidence to support research, clinical care and the Niemann-Pick Disease community.
- Support recruitment for the International Niemann-Pick Disease Registry – a built for purpose disease specific registry for both ASMD and NPC.
- Identify clinically meaningful endpoints to support therapy development.
- Reduce time to diagnosis and campaign for newborn screening.
- Capacity building for members.
- Patient experience and evidence generation.
- Support for the International Niemann-Pick Disease Registry (INPDR).
- Provision of patient expert testimony and lived experience.
- Clinical Guidelines updates.
- Think Again. Think NPC Awareness campaign for NPC.
- Niemann Pick Disease Type C suspicion index (NPC-SI).
By sharing expertise, knowledge, and skills across our network, we aim to improve information and awareness of Niemann-Pick diseases and stimulate research to ultimately enhance the lives of those affected by Niemann Pick Diseases.
INPDA
Executive Committee
Sandy Cowie
Presidente
Canada
Toni Mathieson
Executive Secretary
United Kingdom
Sarah Jannetta
Executive Communications Officer
France
Carmina Calatayud
Executive Treasurer
Spain
Our members
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
Governance
The INPDA is a registered charity in the UK (Charity Number 1150256), with its office located in England. Incorporated in November 2012 under the Companies Act 2006, it is limited by guarantee.
The INPDA operates under its Articles of Association, which can be downloaded here
An executive committee is elected to undertake day to day management activities of the INPDA. The Executive Committee is elected at the biennial INPDA Face-to-Face meeting. In addition to the biennial Face-to-Face meeting the full INPDA council consisting of representatives from each of the member organisations meet virtually every 2 months and ad hoc meetings are called as needs arise.
Members are expected to adhere to a code of conduct that outlines the standards of behavior, responsibilities, and best practices for those involved with the INPDA.
For more information, including INPDA’s Annual Returns, financial history, and compliance history, please visit the Charity Commission’s website.
Support the INPDA
Join our alliance, promote our work, become a sponsor, or make a donation. We’re eager to connect with individuals, organizations, and institutions worldwide dedicated to improving lives affected by NPD.
Let’s make a difference together!
