Finance Score: -5

Governance Score: 6

Support Score: 3

Volatile income & significant deficit in latest year: -5
No PartB

Good trustee age range: +3
Gender balanced board: +3

Grant maker support: +3

Overall GiG Score: 4

NIEMANN-PICK UK

THIS CHARITY IS THE INCORPORATED SUCCESSOR TO REGISTERED CHARITY 1061881 - NIEMANN-PICK DISEASE GROUP UK. The Charity aims to relieve sickness and any distress which may arise therefrom, and to advance the education and awareness of families, professionals and the general public in all matters concerning the disease.

Analysis by Giving is Great

Positives:

The charity has received modest backing from a grant maker
There have been no material income shortfalls in recent years
The Board appears to be well diversified in terms of age and gender

Financial issues to consider:

A PartB annual return has not been required and so detailed financial information is not available from the online data
Income has been volatile recently and was significantly lower than spending in the latest year

Financial Data ?

Income & Spending ?

Sources of Income ?

Y/E		Income £k	Spending £k	Surplus/ Deficit	Fundraising Cost £k	Total Funds £k	Unrestricted Funds £k	Mths Rsrvs	Staff	Volun- teers
30/04/23		£307	£440	£-134	n/a	n/a	n/a	n/a	n/a	10
30/04/22		£416	£338	£79	n/a	n/a	n/a	n/a	n/a	10
30/04/21	*	£351	£332	£19	n/a	n/a	n/a	n/a	n/a	10
30/04/20		£497	£408	£89	n/a	n/a	n/a	n/a	n/a	15
30/04/19		£505	£418	£86	£9	£391	£155	4.4	5	25
30/04/18		£348	£338	£10	£0	£0	£0	n/a	0	0
30/04/17		£244	£358	£-114	£0	£0	£0	n/a	0	0
30/04/16		£405	£269	£136	£0	£0	£0	n/a	0	0
30/04/15		£247	£268	£-21	£0	£0	£0	n/a	0	0
30/04/14		£242	£260	£-19	£0	£0	£0	n/a	0	0
30/04/13		£211	£253	£-42	£0	£0	£0	n/a	0	0
30/04/12		£231	£222	£9	£0	£0	£0	n/a	0	0

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Download accounts

Highest pay bracket: less than £60,000

Established: 13 years

www.npuk.org

info@npuk.org

01914150693

Charity Commission for England and Wales

Tweets

Listed activities

Disability
Education/Training
General Charitable Purposes
The Advancement Of Health Or Saving Of Lives

GiG Classification

Scientific research and testing services

How it operates

Provides advocacy/advice/information
Provides services

Where it operates

Throughout England And Wales,

Who it helps

Children/Young People
Other Charities Or Voluntary Bodies
People With Disabilities

Who works here?

Unknown number of employees
10 volunteers

Who's supporting them? ?

Donations from Grant Makers ?

We have details on the following significant donations. Multi-year donations are allocated to the years for which they are earmarked.

Specific Donations

Amount	When Months	To be used for
National Lottery Community Fund - Mental Health and Wellbeing
£9,827	25/06/2021	The organisation will provide support and counselling to people who have Niemann-Pick disease and their families with the aim of improving access to support to reduce isolation and improve health and ....more The organisation will provide support and counselling to people who have Niemann-Pick disease and their families with the aim of improving access to support to reduce isolation and improve health and wellbeing.
BBC Children in Need - Grant to Niemann-Pick UK
£14,428	30/11/2020	This project will support children and young people who have Niemann-Pick diseases. It will provide a individualised support to improve physical and mental health.
National Lottery Community Fund - Supporting Niemann-Pick patients and their families through the transi
£9,329	31/01/2018 12	The group will run a programme to help young patients affected by Niemann-Pick Disease to reduce the issues of transitioning from paediatric hospitals to adult services.
National Lottery Community Fund - Shaping Our Future Together
£447,108	25/09/2015 60	This is a development of an existing project delivered across England supporting children and adults living with Neimann-Pick disease, along with their families, from diagnosis to bereavement and ....more This is a development of an existing project delivered across England supporting children and adults living with Neimann-Pick disease, along with their families, from diagnosis to bereavement and beyond. It will strengthen their emotional resilience by equipping them with care, support and resources to deal with the challenges of living with a life-limiting, genetic disorder for which there is no cure.

Data sourced from Donors via 360 Giving

How is it governed?

Trustees (12)

Current Trustees appointed

Gender Split

Age Range of Trustees: 38-82

ANTHONY MEAD-WYNNE Appointed: 2023

DR DAVID HOLTON DR Appointed: 2013

PROFESSOR FRANCES MARY PLATT Appointed: 2023, Occupation: Professor

THOMAS KIRKEGAARD JENSE Appointed: 2022

DAVID ROBERTS Appointed: 2011, Occupation: Retired

FIONA DUNNE Appointed: 2019, Occupation: Adminstrator

HELEN CARTER (Chair) Appointed: 2011, Occupation: Legal Assistant Professional S

JANICE BROOKS Appointed: 2011, Occupation: Taxi Driver

JOELLA MELVILLE Appointed: 2016, Occupation: Senior Patient Relationship Manager

WILLIAM OWEN Appointed: 2011, Occupation: Retired

WILLIAM RALPH HENRY EVANS Appointed: 2011, Occupation: General Practitioner

JACQUELINE IMRIE Appointed: 2013, Occupation: Nurse, Other trusteeship: MLD SUPPORT ASSOCIATION UK,

Legal constitution

Charitable company registered in England & Wales on 24/10/2011, number: 1144406
Registered at Companies House on 15/09/2011, number: 07775835

Gift Aid

Registered with HMRC for Gift Aid

Event History

17/01/2012 - Asset transfer in from NIEMANN-PICK DISEASE GROUP UK
11/04/2024 - Asset transfer in from NIEMANN-PICK RESEARCH FOUNDATION
17/04/2024 - Asset transfer in from THE HOLLIE FOUNDATION

Policies in force

Bullying and harassment policy and procedures
Complaints handling
Complaints policy and procedures
Conflicting interests
Engaging external speakers at charity events policy and procedures
Financial reserves policy and procedures
Internal charity financial controls policy and procedures
Internal risk management policy and procedures
Investing charity funds policy and procedures
Investment
Paying staff
Risk management
Safeguarding policy and procedures
Safeguarding vulnerable beneficiaries
Serious incident reporting policy and procedures
Social media policy and procedures
Trustee conflicts of interest policy and procedures
Trustee expenses policy and procedures
Volunteer management

Filing Record

12 returns made; AR21: 17 days late,

Recent reorganisation events:

Asset transfer in from NIEMANN-PICK RESEARCH FOUNDATION on 11/04/2024
Asset transfer in from THE HOLLIE FOUNDATION on 17/04/2024

Main office

SUITE 2
VERMONT HOUSE
CONCORD
WASHINGTON
TYNE & WEAR

Objectives

TO RELIEVE SICKNESS AMONGST FAMILIES AFFLICTED BY NIEMANN-PICK DISEASE AND ANY DISTRESS WHICH MAY ARISE THEREFROM AND TO ADVANCE THE EDUCATION OF SUCH FAMILIES, INTERESTED PROFESSIONALS AND THE GENERAL PUBLIC IN ALL MATTERS CONCERNING THE DISEASE AS THE COMMITTEE MAY DETERMINE (THE OBJECTS)THIS CHARITY IS THE INCORPORATED SUCCESSOR TO REGISTERED CHARITY 1061881 - NIEMANN-PICK DISEASE GROUP UK

Data Sources