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. Despite our language and cultural differences, INPDA members are brought together by a single aim – to improve outcomes for all those affected by Niemann-Pick diseases. 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.

INPDA Executive Board

Sandy Cowie



Joslyn Crowe

Vice President

United States of America

Toni Mathieson

Executive Secretary

United Kingdom

Lisa Chavez

Executive Communications Officer

United States of America

Isabel Hontanilla

Executive Treasurer


Our members


Australian NPC Disease Foundation

Mandy Whitechurch (Founder and President)

Deanna Carpino ( General Manager)

Amy Liddick (Secretary)


Associação Niemann Pick Brasil – ANPB

Niemann-Pick B R-S (Associate Member Group)




China Niemann-Pick  Disease Association




Vaincre Les Maladies Lysosomales (VML)

Niemann-Pick Français (Associate Member Group)



LSD Society Pakistan (Associate Member Group)


Fundación Niemann-Pick de España (FNP)

Asociación Niemann-Pick Fuenlabrada (Associate Member Group)

ASMD España (Associate Member Group)

Our aims

The INPDA’s overall mission is to aid families affected by  Niemann-Pick diseases worldwide through a network of families, patient groups and healthcare professionals.  Our network provides a collaborative forum for the sharing of information and experience regarding all aspects of Niemann-Pick disease, including care and support, the provision and distribution of information, and the furtherance of research.

We  aim to share expertise, knowledge and skills across our network, providing mutual support between patient groups, improving information and awareness of NPD, and stimulating research.

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

Join Us

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 membership within the INPDA known as Full and Associate Mmbership:

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, affiliated with an umbrella group, 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.

Email for more information.


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, and members are asked to follow a code of conduct, which provides clear guidelines as to the standards of behavior, responsibilities, and best practice expected of those involved with the INPDA. 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.

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