Finance Score: -1

Governance Score: 6

Support Score: 3

Reasonable growth: +1
Deficit latest year: -2
No PartB

Good trustee age range: +3
Dynamic board: +3

Grant maker support: +3

Overall GiG Score: 8

THE EHLERS-DANLOS SUPPORT UK

Key objectives for the Charity include providing support and guidance to members; growing the membership; increasing awareness of the condition and the charity both amongst the medical community and the general public; promoting/encouraging medical research; and fundraising. 'MAKING OUR INVISIBLE VISIBLE'

Analysis by Giving is Great

Positives:

The charity has received backing from several prominent grant makers recently
There has been reasonable growth in spending over the last 3 years relative to the previous period
There have been no material income shortfalls in recent years
The Board appears to be well diversified in terms of age and dynamic in terms of composition

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 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
31/03/23	£424	£537	£-113	n/a	n/a	n/a	n/a	n/a	70
31/03/22	£484	£496	£-13	n/a	n/a	n/a	n/a	n/a	70
31/03/21	£407	£405	£1	n/a	n/a	n/a	n/a	n/a	65
31/03/20	£447	£334	£113	n/a	n/a	n/a	n/a	n/a	50
31/03/19	£434	£285	£149	n/a	n/a	n/a	n/a	n/a	52
31/03/18	£393	£427	£-34	£0	£0	£0	n/a	0	0
31/03/17	£363	£370	£-7	£0	£0	£0	n/a	0	0
31/03/16	£330	£335	£-5	£0	£0	£0	n/a	0	0
31/03/15	£235	£195	£40	£0	£0	£0	n/a	0	0

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Highest pay bracket: less than £60,000

Established: 10 years

www.ehlers-danlos.org

info@ehlers-danlos.org

02087365604

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

Financial or material assistance

How it operates

Provides advocacy/advice/information
Sponsors or undertakes research

Where it operates

Northern Ireland, Scotland, Throughout England And Wales,

Who it helps

People With Disabilities

Who supports 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 - Support groups for people with Ehlers-Danlos syndromes
£9,950	21/04/2023	The funding will be used to continue running support groups for people living with Ehlers-Danlos syndromes and hypermobility spectrum disorders. The project aims to enable them to manage their health ....more The funding will be used to continue running support groups for people living with Ehlers-Danlos syndromes and hypermobility spectrum disorders. The project aims to enable them to manage their health needs and improve their mental wellbeing.
National Lottery Community Fund - Support groups for people with Ehlers-Danlos syndromes
£9,990	21/03/2023	The Ehlers-Danlos Support UK will use £9990 to expand volunteer-led peer support across Wales for those with a genetic connective tissue disorder. The grant will fund volunteer recruitment and ....more The Ehlers-Danlos Support UK will use £9990 to expand volunteer-led peer support across Wales for those with a genetic connective tissue disorder. The grant will fund volunteer recruitment and training activities travel marketing and IT. Bydd Ehlers-Danlos Support UK yn defnyddio £9990 i ehangu cefnogaeth gan gymheiriaid a arweinir gan wirfoddolwyr yng Nghymru i bobl ac anhwylderau meinwe gysylltiol. Bydd y grant yn talu am recriwtio gwirfoddolwyr a hyfforddiant gweithgareddau teithio marchnata a TG.
Garfield Weston Foundation - Main Grants award
£15,000	16/12/2022	Information and support for people affected by Ehlers-Danlos syndromes
Garfield Weston Foundation - Main Grants award
£15,000	20/08/2021	Support for people with Ehlers-Danlos syndromes
Garfield Weston Foundation - Main Grants award
£10,000	06/03/2020	N/A
National Lottery Community Fund - Vascular EDS conference
£9,966	18/07/2019 12	The funding will be used by the organisation to run a two day conference to educate medical professionals and families about vascular Ehlers-Danlos syndrome. The organisation aims to improve ....more The funding will be used by the organisation to run a two day conference to educate medical professionals and families about vascular Ehlers-Danlos syndrome. The organisation aims to improve diagnosis and build networks for people with vascular Ehlers-Danlos syndrome.
National Lottery Community Fund - Expanding communities
£242,587	18/04/2019 36	The organisation will use funding to continue and develop its current project which provides support to those living with Ehler-Danlos Syndromes (EDS) across England. The organisation will continue ....more The organisation will use funding to continue and develop its current project which provides support to those living with Ehler-Danlos Syndromes (EDS) across England. The organisation will continue to offer peer support groups and closed social media groups led by its Volunteer Area Coordinators. These will be complemented by new online support groups
Woodward Charitable Trust - Towards the costs of a teenage health and wellbeing workshop
£1,000	12/11/2018	Towards the costs of a teenage health and wellbeing workshop.
National Lottery Community Fund - EDS Community Matters
£282,370	01/12/2014 47	Not Available
National Lottery Community Fund - Provide physical activities for children with Ehlers-Danlos Syndrome
£10,000	19/11/2014 12	Not Available

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Data sourced from Donors via 360 Giving

How is it governed?

Trustees (10)

Current Trustees appointed

Gender Split

Age Range of Trustees: 30-69

ALISON JANE ROUX Appointed: 2022, Occupation: Consultant

ANNE DOMINIQUE MYRA LAVERY Appointed: 2022, Occupation: Retired

CHARLOTTE EMILY WILLIAMS Appointed: 2020, Occupation: Nhs Hospital Senior Manager

DR ADRIAN STEEL Appointed: 2018, Occupation: Museums And Heritage Manager, Other trusteeship: THE WOMEN OF VISION TRUST,

ELLIE CANNELL Appointed: 2022, Occupation: Charity Worker

JASON STEPHEN PEARCE Appointed: 2018, Occupation: Chartered Accountant, Other trusteeship: COWLEY VILLAGE HALL,

LEAH SONIA MANSFIELD Appointed: 2015, Occupation: Barrister

LAURE FRANCOISE MARIE NAS DE TOURRIS Appointed: 2022

SARITA YASMIN AUJLA Appointed: 2020, Occupation: Partnerships Manager For A Charity

STEPHEN STACEY (Chair) Appointed: 2017, Occupation: Retired

Legal constitution

Charitable company registered in England & Wales on 13/05/2014, number: 1157027
Registered at Companies House on 05/03/2014, number: 08924646

Gift Aid

Registered with HMRC for Gift Aid

Policies in force

Bullying and harassment policy and procedures
Complaints handling
Complaints policy and procedures
Conflicting interests
Financial reserves policy and procedures
Internal charity financial controls policy and procedures
Internal risk management policy and procedures
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

9 returns made; all on time

Recent reorganisation events:

Asset transfer in from EHLERS-DANLOS SUPPORT UK on 20/10/2022

Main office

International House
45-55 Commercial Street
London
E1 6BD

Objectives

FOR THE RELIEF OF PERSONS SUFFERING FROM EHLERS-DANLOS SYNDROME AND TO ADVANCE MEDICAL RESEARCH INTO THE CAUSE, CURE, PREVENTION OF THE SYNDROME.

Data Sources