International Niemann–Pick Disease Alliance

About us

Who are we?

The International Niemann Pick Disease Alliance (INPDA) is a global network of non-profit organisations, supporting persons affected by Niemann Pick Diseases (NPD).  The alliance was formed in 2009 to provide a forum for patient groups and professionals working in the field of NPD.

In the 1990s, when a person was diagnosed with NPD they were told they would never meet anyone else affected, as the conditions are so rare. But people directly impacted by the disease – patients themselves, their family members and friends – began setting up support groups, connecting families and drawing in impassioned and dedicated people to fight their corner, determined that no family diagnosed with NPD should face the future alone.

Today, we have an international network of non-profit groups, supporting hundreds of families, and we continue to grow. By joining together through the INPDA, we give Niemann Pick Diseases a stronger global voice, and progress towards effective treatments for these conditions is accelerated.

Our members

Argentina

Associacion Niemann Pick de Argentina

www.npcargentina.org

info@npcargentina.org

Canada

Canadian Chapter of the National Niemann Pick Disease Foundation (CCNNPDF)

www.nnpdf.ca

nnpdf@nnpdf.org

France

Vaincre Les Maladies Lysosomales (VML)

scientifique@vml-asso.org

www.vml-asso.org

 

Germany

Niemann Pick Selbsthilfegruppe

www.niemann-pick.de

info@niemann-pick.de

Italy

Associazione Italiana Niemann Pick

www.niemannpick.org

info@niemannpick.org

The Netherlands

Volwassenen, Kinderen en Stofwisselingsziekten (VKS)

www.stofwisselingsziekten.nl

info@stofwisselingsziekten.nl

Spain

Foundacion Niemann-Pick de Espana (FNP)

www.fnp.es

Switzerland

Niemann Pick Suisse

www.npsuisse.ch

contact@npsuisse.ch

United Kingdom

Niemann Pick UK (NP-UK)

www.niemann-pick.org.uk

info@niemann-pick.org.uk

USA

National Niemann-Pick Disease Foundation (NNPDF)

www.nnpdf.org

nnpdf@nnpdf.org

Brazil

Associação Niemann Pick Brasil – ANPB

www.niemannpickbrasil.org.br

contato@niemannpickbrasil.org.br

 

Australia

Australian NPC Disease Foundation

www.npcd.org.au

mandy@npcd.org.au / kellie@npcd.org.au

China

中国尼曼匹克关爱中心

China Niemann-Pick  Disease Association

http://chinanpd.org.cn/

chinanpd@sina.cn

 

Our aims

INPDA daisyThe INPDA’s overall mission is to relieve sickness and distress amongst families affected by Niemann Pick Diseases worldwide.

We will achieve this by sharing expertise, knowledge and skills across our network, providing mutual support between patient groups, improving information and awareness of NPD, and stimulating research.

Our network enables connections, bringing together people who can make a difference for this group of devastating rare conditions.

For more information on what we’re doing to achieve these aims, see Our Work.

Join Us

NP-UK

In joining the INPDA, your organisation will become part of a network of groups dedicated to improving the lives of people with Niemann Pick Diseases, their families and carers worldwide. Together, we demonstrate to the world that although rare, we have a strong global voice and will progress together.

If your organisation shares our vision of progress for Niemann Pick Diseases, we would like to hear from you, wherever you are based.

There are two categories of INPDA membership:

Full members must have been a constituted not for profit organisation, registered in the country of origin, for at least two years, and be involved in all of the following three areas:

  • family support
  • information provision
  • research

Each full member has one voting representative on the Governing Council.

Associate members are not for profit organisations that are constituted and registered in their country of origin, and are involved in at least one of the following areas:

  • family support
  • information provision
  • research

Associate members participate in networking and mutual support events, receive information and attend the biennial meeting.

By becoming a member of the INPDA you consent to your organisational contact information being shared with third parties through the INPDA website. We’ll list your name, publicise your activities, and add you to our information distribution list. You’ll be invited to our regular teleconferences, and also to our biennial face to face meeting.

Contact us to find out more.

Governance

The INPDA is a charity registered in the UK under Charity Number 1150256, with an office located in England. It was incorporated in November 2012 under the Companies Act 2006 and is limited by guarantee.

The INPDA is governed by its Articles of Association that can be downloaded below. You can also follow the link here to the Charity Commission’s website to view INPDA’s Annual Returns, as well as other important info such as financial history, compliance history, and more.

Join the Registry

Calling all patients and carers! We've created a global registry of all NPD patients - if you're not enrolled yet, join us now...

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