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Niemann-Pick Diseases
Niemann-Pick Diseases

At NPUK we are dedicated to supporting the individuals, families and friends affected by Niemann-Pick diseases. We offer practical and emotional support, provide information and strive to raise further awareness of the diseases in the hope of facilitating research and potential therapies.
Niemann-Pick Diseases

ASMD Niemann-Pick Disease type A

ASMD Niemann-Pick Disease type B

Niemann-Pick Disease type C

Genetic Testing

UK Specialist Centres

Resources

Publications

Write to Your MP

Useful Links

Governance
ASMD Perspective Index

Privacy Policy
What We Do
What We Do

Our main focus, above all else, is to provide unique care and support services to families and friends affected by Niemann-Pick diseases (whether ASMD or NPC). We originally started out as a parent support group made up of just ten families affected and over 30 years later we stand stronger than ever…
Care & Support

Newly Diagnosed

How We Can Help

Personal Stories

Financial Help

Bereavement Support

Extra Help
About Us

Our Team

Our Trustees

Our History

FAQs

Our Partners

INPDA

INPDR

UK LSD Collaborative

Research

Understanding Research

Current Clinical Trials

Funded Projects

The William French Memorial Award

The Peter Carlton Jones Memorial Award

Our Research CV

Newborn Screening
Get Involved
Get Involved

There are so many ways our community can get involved with our work here at NPUK – whether as a fundraiser, as a volunteer (whether this be at an event or even as a member of our Board of Trustees), or even simply sharing one of our awareness campaigns…there’s no limit to what you can do, and by getting involved you can absolutely make a difference!
Fundraise for NPUK

Take On a Challenge

Host a Fundraising Event

Remember Someone Special

NPUK Fundraising Heroes

Life Is Rare Campaign
Volunteer With Us

Support Our Campaigns

Become a Trustee

Use Your Skills For Good
Latest News
Latest News

We understand how important it is to stay informed for our community, which is why have developed this section to feature the latest news, research, and updates which may matter to you and your extended network.

If you have any further queries related to anything you read, we are here and happy to help – we want to ensure you feel connected and supported every step of the way. Simply email us at: info@npuk.org or DM on the social media platform of your choice @niemannpickuk
Regular Updates

NPUK News

Clinical Trials

Blog

Events

Donate

At Niemann-Pick UK (NPUK), we’re a small charity dedicated to improving the lives of those affected by Niemann-Pick diseases…

Our work – raising awareness, supporting families, and funding research – depends on the generosity and talents of our volunteers. If you have a skill, passion, or expertise, you can make a genuine difference by putting it to work for our community.

Your unique abilities can help us reach more people, amplify our message, and provide essential support to families living with Niemann-Pick diseases. Whether you’re creative, tech-savvy, or a strategic thinker, your contribution will help us grow, innovate, and continue our mission. Volunteering your skills is also a rewarding way to connect with a compassionate community and create lasting impact, no matter how much time you can spare.

Skills We’re Looking For

We welcome all sorts of talents! Here are some examples of skills that can make a significant difference at NPUK:

Graphic Design & Content Creation: Design striking posters, social media graphics, or newsletters to spread awareness and promote our events.
Digital Marketing & Social Media: Manage our social media channels, create engaging posts, or develop campaigns to boost our online presence.
Writing & Copywriting: Craft compelling stories, blog posts, or grant applications to share our mission and secure funding.
Fundraising & Event Planning: Organise community fundraising activities, charity runs, or virtual events to raise vital funds for our services and research.
Web Development & Digital Support: Enhance our website, improve user experience, or provide tech support to keep our digital tools running smoothly.
Photography & Videography: Capture moments at our events or create short videos to showcase the impact of our work.
Public Speaking & Advocacy: Represent NPUK at local events, schools, or businesses to raise awareness about Niemann-Pick diseases.
Administration & Project Management: Support our small team with organisational tasks, data management, or coordinating volunteer efforts.

Don’t see your skill listed? Let us know what you can offer—we’re always open to new ideas and ways to collaborate!

How It Works

Volunteering with NPUK is flexible and tailored to you. Here’s how to get started:

Tell Us About Yourself: Contact us at info@npuk.org or phone us at 0191 415 0693 to share your skills and availability.
Find the Right Fit: We’ll work with you to match your talents to our needs, whether it’s a one-off project or an ongoing role.
Make an Impact: Use your skills to support our community, from creating resources to helping us reach new audiences.

Whether you can contribute a few hours or take on a larger project, every effort counts. We’ll provide guidance and support to ensure your experience is fulfilling and impactful.

Real Impact, Real Stories

Your skills can change lives. For example:

A volunteer graphic designer created a powerful awareness campaign that reached thousands online, helping families feel less isolated.
A fundraising expert organised a virtual quiz night, raising funds to support our 24/7 helpline.
A web developer improved our website, making it easier for families to access essential resources.

You could be the next person to make a difference!

Join Us Today

Ready to use your skills for good? Get in touch with our team at info@npuk.org or phone us at 0191 415 0693. We’re excited to learn about your talents and work together to support those affected by Niemann-Pick diseases.