BritDB

CCEW Charity Commission profile

CURE EB (FORMERLY KNOWN AS SOHANA RESEARCH FUND)

Registered charity 1158672 · organisation 5050985

01 Identity

Registration and reporting

Registration status
Registered
Reporting status
Submission Received
Charity type
CIO
Registered
25 September 2014
Removed
Not supplied
Financial period
1 January 2024 – 31 December 2024
Latest income
£4,850,763
Latest expenditure
£1,410,954
Gift Aid
Yes
Owns or uses land
No
In administration
No
Insolvent
No
CIO
Yes

Public contact address: 10 HUNTINGDON STREET, LONDON, N1 1BU

Website recorded by the regulator: www.cure-eb.org (displayed as text)

02 Activities

What the charity does

SRF seeks to assist those suffering from Epidermolysis Bullosa ("EB"), in particular but not exclusively by making grants:(1) to fund medical research and/or clinical trials anywhere in the world for the purpose of discovering, developing and delivering treatments for EB; and(2) to fund the treatment of patients who are suffering from EB.

03 Official extract

Charity Annual Return History

Fin Period Start Date
1 January 2024
Fin Period End Date
31 December 2024
Ar Cycle Reference
AR24
Reporting Due Date
31 October 2025
Date Annual Return Received
25 October 2025
Date Accounts Received
25 October 2025
Total Gross Income
£4,850,763
Total Gross Expenditure
£1,410,954
Fin Period Start Date
1 January 2023
Fin Period End Date
31 December 2023
Ar Cycle Reference
AR23
Reporting Due Date
31 October 2024
Date Annual Return Received
29 October 2024
Date Accounts Received
29 October 2024
Total Gross Income
£730,918
Total Gross Expenditure
£1,552,666
Fin Period Start Date
1 January 2022
Fin Period End Date
31 December 2022
Ar Cycle Reference
AR22
Reporting Due Date
31 October 2023
Date Annual Return Received
31 October 2023
Date Accounts Received
31 October 2023
Total Gross Income
£1,000,863
Total Gross Expenditure
£1,122,145
Fin Period Start Date
1 January 2021
Fin Period End Date
31 December 2021
Ar Cycle Reference
AR21
Reporting Due Date
31 October 2022
Date Annual Return Received
31 October 2022
Date Accounts Received
31 October 2022
Total Gross Income
£1,565,380
Total Gross Expenditure
£858,839
Fin Period Start Date
1 January 2020
Fin Period End Date
31 December 2020
Ar Cycle Reference
AR20
Reporting Due Date
31 October 2021
Date Annual Return Received
31 October 2021
Date Accounts Received
31 October 2021
Total Gross Income
£796,938
Total Gross Expenditure
£759,771

04 Official extract

Charity Annual Return Parta

Latest Fin Period Submitted Ind
Yes
Fin Period Order Number
1
Ar Cycle Reference
AR24
Fin Period Start Date
1 January 2024
Fin Period End Date
31 December 2024
Ar Due Date
31 October 2025
Ar Received Date
25 October 2025
Total Gross Income
£4,850,763
Total Gross Expenditure
£1,410,954
Grant Making Is Main Activity
Yes
Count Govt Contracts
0
Count Govt Grants
£0
Charity Has Trading Subsidiary
Yes
Trustee Also Director Of Subsidiary
Yes
Does Trustee Receive Any Benefit
No
Trustee Payments Acting As Trustee
No
Trustee Receives Payments Services
No
Trustee Receives Other Benefit
No
Trustee Resigned Employment
No
Employees Salary Over 60k
No
Count Volunteers
15
Latest Fin Period Submitted Ind
No
Fin Period Order Number
2
Ar Cycle Reference
AR23
Fin Period Start Date
1 January 2023
Fin Period End Date
31 December 2023
Ar Due Date
31 October 2024
Ar Received Date
29 October 2024
Total Gross Income
£730,918
Total Gross Expenditure
£1,552,666
Grant Making Is Main Activity
Yes
Count Govt Contracts
0
Count Govt Grants
£0
Charity Has Trading Subsidiary
Yes
Trustee Also Director Of Subsidiary
Yes
Does Trustee Receive Any Benefit
No
Trustee Payments Acting As Trustee
No
Trustee Receives Payments Services
No
Trustee Receives Other Benefit
No
Trustee Resigned Employment
No
Employees Salary Over 60k
No
Count Volunteers
15
Latest Fin Period Submitted Ind
No
Fin Period Order Number
3
Ar Cycle Reference
AR22
Fin Period Start Date
1 January 2022
Fin Period End Date
31 December 2022
Ar Due Date
31 October 2023
Ar Received Date
31 October 2023
Total Gross Income
£1,000,863
Total Gross Expenditure
£1,122,145
Charity Raises Funds From Public
Yes
Charity Professional Fundraiser
No
Charity Commercial Participator
No
Grant Making Is Main Activity
Yes
Charity Receives Govt Funding Contracts
No
Charity Receives Govt Funding Grants
No
Charity Has Trading Subsidiary
Yes
Trustee Also Director Of Subsidiary
Yes
Does Trustee Receive Any Benefit
No
Trustee Resigned Employment
No
Employees Salary Over 60k
No
Count Volunteers
10
Latest Fin Period Submitted Ind
No
Fin Period Order Number
4
Ar Cycle Reference
AR21
Fin Period Start Date
1 January 2021
Fin Period End Date
31 December 2021
Ar Due Date
31 October 2022
Ar Received Date
31 October 2022
Total Gross Income
£1,565,380
Total Gross Expenditure
£858,839
Charity Raises Funds From Public
Yes
Charity Professional Fundraiser
No
Charity Commercial Participator
No
Grant Making Is Main Activity
Yes
Charity Receives Govt Funding Contracts
No
Charity Receives Govt Funding Grants
No
Charity Has Trading Subsidiary
Yes
Trustee Also Director Of Subsidiary
Yes
Does Trustee Receive Any Benefit
No
Trustee Resigned Employment
No
Employees Salary Over 60k
No
Count Volunteers
10
Latest Fin Period Submitted Ind
No
Fin Period Order Number
5
Ar Cycle Reference
AR20
Fin Period Start Date
1 January 2020
Fin Period End Date
31 December 2020
Ar Due Date
31 October 2021
Ar Received Date
31 October 2021
Total Gross Income
£796,938
Total Gross Expenditure
£759,771
Charity Raises Funds From Public
Yes
Charity Professional Fundraiser
No
Charity Commercial Participator
No
Grant Making Is Main Activity
Yes
Charity Receives Govt Funding Contracts
No
Charity Receives Govt Funding Grants
No
Charity Has Trading Subsidiary
Yes
Trustee Also Director Of Subsidiary
Yes
Does Trustee Receive Any Benefit
No
Trustee Resigned Employment
No
Employees Salary Over 60k
No
Count Volunteers
10

05 Official extract

Charity Annual Return Partb

Latest Fin Period Submitted Ind
Yes
Fin Period Order Number
1
Ar Cycle Reference
AR24
Fin Period Start Date
1 January 2024
Fin Period End Date
31 December 2024
Ar Due Date
31 October 2025
Ar Received Date
25 October 2025
Income Donations And Legacies
4807468
Income Other Trading Activities
0
Income Charitable Activities
0
Income Investments
43295
Income Other
0
Income Total Income And Endowments
4850763
Income Legacies
0
Income Endowments
0
Expenditure Raising Funds
£163,288
Expenditure Charitable Expenditure
£1,247,666
Expenditure Other
0
Expenditure Total
1410954
Expenditure Investment Management
0
Expenditure Grants Institution
1047247
Expenditure Governance
10532
Expenditure Support Costs
100418
Expenditure Depreciation
0
Gain Loss Investment
0
Gain Loss Pension Fund
0
Gain Loss Revaluation Fixed Investment
0
Gain Loss Other
0
Reserves
£235,377
Assets Total Fixed
317752
Assets Own Use
0
Assets Long Term Investment
317752
Defined Benefit Pension Scheme
0
Assets Other Assets
£6,472,142
Assets Total Liabilities
£1,664,342
Assets Current Investment
2500000
Assets Total Assets And Liabilities
£5,125,552
Creditors One Year Total Current
1169204
Creditors Falling Due After One Year
495138
Assets Cash
£1,852,797
Funds Endowment
0
Funds Unrestricted
235377
Funds Restricted
4890175
Funds Total
5125552
Count Employees
0
Consolidated Accounts
Yes
Latest Fin Period Submitted Ind
No
Fin Period Order Number
2
Ar Cycle Reference
AR23
Fin Period Start Date
1 January 2023
Fin Period End Date
31 December 2023
Ar Due Date
31 October 2024
Ar Received Date
29 October 2024
Income Donations And Legacies
730918
Income Other Trading Activities
0
Income Charitable Activities
0
Income Investments
0
Income Other
0
Income Total Income And Endowments
730918
Income Legacies
0
Income Endowments
0
Expenditure Raising Funds
£70,896
Expenditure Charitable Expenditure
£1,481,770
Expenditure Other
0
Expenditure Total
1552666
Expenditure Investment Management
0
Expenditure Grants Institution
1066588
Expenditure Governance
0
Expenditure Support Costs
104718
Expenditure Depreciation
310464
Gain Loss Investment
47
Gain Loss Pension Fund
0
Gain Loss Revaluation Fixed Investment
-310464
Gain Loss Other
0
Reserves
£199,920
Assets Total Fixed
118427
Assets Own Use
0
Assets Long Term Investment
118427
Defined Benefit Pension Scheme
0
Assets Other Assets
£2,997,956
Assets Total Liabilities
£1,430,640
Assets Current Investment
1500000
Assets Total Assets And Liabilities
£1,685,743
Creditors One Year Total Current
820521
Creditors Falling Due After One Year
610119
Assets Cash
£1,342,509
Funds Endowment
0
Funds Unrestricted
199920
Funds Restricted
1485823
Funds Total
1685743
Count Employees
0
Consolidated Accounts
Yes
Latest Fin Period Submitted Ind
No
Fin Period Order Number
3
Ar Cycle Reference
AR22
Fin Period Start Date
1 January 2022
Fin Period End Date
31 December 2022
Ar Due Date
31 October 2023
Ar Received Date
31 October 2023
Income Donations And Legacies
1000852
Income Other Trading Activities
0
Income Charitable Activities
0
Income Investments
11
Income Other
0
Income Total Income And Endowments
1000863
Income Legacies
0
Income Endowments
0
Expenditure Raising Funds
£89,015
Expenditure Charitable Expenditure
£1,033,130
Expenditure Other
0
Expenditure Total
1122145
Expenditure Investment Management
0
Expenditure Grants Institution
947065
Expenditure Governance
9300
Expenditure Support Costs
112910
Expenditure Depreciation
0
Gain Loss Investment
0
Gain Loss Pension Fund
0
Gain Loss Revaluation Fixed Investment
0
Gain Loss Other
0
Reserves
£2,507,444
Assets Total Fixed
428891
Assets Own Use
0
Assets Long Term Investment
428891
Defined Benefit Pension Scheme
0
Assets Other Assets
£2,990,850
Assets Total Liabilities
£912,297
Assets Current Investment
0
Assets Total Assets And Liabilities
£2,507,444
Creditors One Year Total Current
912297
Creditors Falling Due After One Year
0
Assets Cash
£2,800,640
Funds Endowment
0
Funds Unrestricted
199723
Funds Restricted
2307721
Funds Total
2507444
Count Employees
1
Consolidated Accounts
Yes
Latest Fin Period Submitted Ind
No
Fin Period Order Number
4
Ar Cycle Reference
AR21
Fin Period Start Date
1 January 2021
Fin Period End Date
31 December 2021
Ar Due Date
31 October 2022
Ar Received Date
31 October 2022
Income Donations And Legacies
1565378
Income Other Trading Activities
0
Income Charitable Activities
0
Income Investments
2
Income Other
0
Income Total Income And Endowments
1565380
Income Legacies
0
Income Endowments
0
Expenditure Raising Funds
£38,028
Expenditure Charitable Expenditure
£820,811
Expenditure Other
0
Expenditure Total
858839
Expenditure Investment Management
0
Expenditure Grants Institution
764768
Expenditure Governance
56043
Expenditure Support Costs
94071
Expenditure Depreciation
0
Gain Loss Investment
0
Gain Loss Pension Fund
0
Gain Loss Revaluation Fixed Investment
0
Gain Loss Other
0
Reserves
£2,628,726
Assets Total Fixed
428891
Assets Own Use
0
Assets Long Term Investment
428891
Defined Benefit Pension Scheme
0
Assets Other Assets
£2,369,209
Assets Total Liabilities
£169,374
Assets Current Investment
0
Assets Total Assets And Liabilities
£2,628,726
Creditors One Year Total Current
169374
Creditors Falling Due After One Year
0
Assets Cash
£2,249,515
Funds Endowment
0
Funds Unrestricted
2472499
Funds Restricted
156227
Funds Total
2628726
Count Employees
0
Consolidated Accounts
Yes
Latest Fin Period Submitted Ind
No
Fin Period Order Number
5
Ar Cycle Reference
AR20
Fin Period Start Date
1 January 2020
Fin Period End Date
31 December 2020
Ar Due Date
31 October 2021
Ar Received Date
31 October 2021
Income Donations And Legacies
791354
Income Other Trading Activities
0
Income Charitable Activities
0
Income Investments
5584
Income Other
0
Income Total Income And Endowments
796938
Income Legacies
0
Income Endowments
0
Expenditure Raising Funds
£24,273
Expenditure Charitable Expenditure
£735,498
Expenditure Other
0
Expenditure Total
759771
Expenditure Investment Management
0
Expenditure Grants Institution
591593
Expenditure Governance
9900
Expenditure Support Costs
51909
Expenditure Depreciation
0
Gain Loss Investment
0
Gain Loss Pension Fund
0
Gain Loss Revaluation Fixed Investment
0
Gain Loss Other
0
Reserves
£1,824,284
Assets Total Fixed
402928
Assets Own Use
0
Assets Long Term Investment
402928
Defined Benefit Pension Scheme
0
Assets Other Assets
£1,934,812
Assets Total Liabilities
£415,555
Assets Current Investment
25963
Assets Total Assets And Liabilities
£1,922,185
Creditors One Year Total Current
415555
Creditors Falling Due After One Year
0
Assets Cash
£1,802,922
Funds Endowment
0
Funds Unrestricted
1824284
Funds Restricted
97901
Funds Total
1922185
Count Employees
0
Consolidated Accounts
Yes

06 Official extract

Charity Area Of Operation

Geographic Area Type
Country
Geographic Area Description
Spain
Parent Geographic Area Type
Continent
Parent Geographic Area Description
Europe
Welsh Ind
No
Geographic Area Type
Country
Geographic Area Description
France
Parent Geographic Area Type
Continent
Parent Geographic Area Description
Europe
Welsh Ind
No
Geographic Area Type
Country
Geographic Area Description
United States
Parent Geographic Area Type
Continent
Parent Geographic Area Description
North America
Welsh Ind
No
Geographic Area Type
Region
Geographic Area Description
Throughout England And Wales
Welsh Ind
No

07 Official extract

Charity Classification

Classification Code
103
Classification Type
What
Classification Description
The Advancement Of Health Or Saving Of Lives
Classification Code
104
Classification Type
What
Classification Description
Disability
Classification Code
308
Classification Type
How
Classification Description
Sponsors Or Undertakes Research
Classification Code
206
Classification Type
Who
Classification Description
Other Defined Groups
Classification Code
301
Classification Type
How
Classification Description
Makes Grants To Individuals
Classification Code
302
Classification Type
How
Classification Description
Makes Grants To Organisations
Classification Code
203
Classification Type
Who
Classification Description
People With Disabilities

08 Official extract

Charity Event History

Charity Name
CURE EB (FORMERLY KNOWN AS SOHANA RESEARCH FUND)
Charity Event Order
2
Event Type
Asset transfer in
Date Of Event
2021-12-08T00:00:00
Reason
Removed by application
Assoc Organisation Number
5063926
Assoc Registered Charity Number
1163875
Assoc Charity Name
THE PHOEBE RESEARCH FUND
Charity Name
CURE EB (FORMERLY KNOWN AS SOHANA RESEARCH FUND)
Charity Event Order
1
Event Type
CIO registration
Date Of Event
2014-09-25T00:00:00

09 Official extract

Charity Governing Document

Governing Document Description
CIO - FOUNDATION REGISTERED 25 SEP 2014AMENDED ON 20 MAR 2018AMENDED ON 21 MAR 2018
Charitable Objects
FOR THE PUBLIC BENEFIT, (A) THE ADVANCEMENT OF HEALTH AND (B) THE RELIEF AND ASSISTANCE OF PEOPLE IN NEED WHO ARE SUFFERING FROM EPIDERMOLYSIS BULLOSA, IN PARTICULAR BUT NOT EXCLUSIVELY BY MAKING GRANTS: (1) TO FUND MEDICAL RESEARCH AND/OR CLINICAL TRIALS ANYWHERE IN THE WORLD FOR THE PURPOSE OF DISCOVERING, DEVELOPING AND DELIVERING TREATMENTS FOR EPIDERMOLYSIS BULLOSA; AND (2) TO FUND THE TREATMENT OF PATIENTS WHO ARE SUFFERING FROM EPIDERMOLYSIS BULLOSA. NOTHING IN THIS CONSTITUTION SHALL AUTHORISE AN APPLICATION OF THE PROPERTY OF THE CIO FOR THE PURPOSES WHICH ARE NOT CHARITABLE IN ACCORDANCE WITH SECTION 7 OF THE CHARITIES AND TRUSTEE INVESTMENT (SCOTLAND) ACT 2005 OR SECTION 2 OF THE CHARITIES ACT (NORTHERN IRELAND) 2008.

10 Official extract

Charity Other Names

Charity Name Id
549202
Charity Name Type
Working name
Charity Name
SRF
Charity Name Id
549201
Charity Name Type
Previous name
Charity Name
SOHANA RESEARCH FUND

11 Official extract

Charity Policy

Policy Name
Financial reserves policy and procedures
Policy Name
Serious incident reporting policy and procedures
Policy Name
Safeguarding policy and procedures
Policy Name
Conflicting interests
Policy Name
Risk management
Policy Name
Investing charity funds policy and procedures
Policy Name
Complaints policy and procedures
Policy Name
Safeguarding vulnerable beneficiaries
Policy Name
Internal risk management policy and procedures
Policy Name
Internal charity financial controls policy and procedures
Policy Name
Complaints handling