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2021-10-26-accounts

Trustees’ Annual Report for the period

From 31 Oct 2020 Period start date To 30 Oct 2021 Period end date

Charity name: Lipodystrophy UK

Charity registration number: 1175462

Objectives and Activities

SORP reference
Summary of the purposes of
the charity as set out in its
governing document		 Para 1.17 The objects of the CIO are:
i.
To raise awareness of Lipodystrophy
conditions, both within the medical
profession and the general public;
ii.
To provide information and support to
people with Lipodystrophy and those
affected by it;
iii. To advocate for excellent care and
improved treatment options for people
with Lipodystrophy;
iv. To encourage research addressing the
concerns of people with Lipodystrophy
Summary of the main
activities in relation to those
purposes for the public
benefit, in particular, the
activities, projects or
services identified in the
accounts.		 Para 1.17 and
1.19		 - Metreleptin approved by NICE for NHS
funding
- Patient pathways survey for clinicians
-
- Patient support activities online
- Raising awareness (World Lipodystrophy
Day, conferences, publications, social
media)
- Fatigue project green lighted
Statement confirming
whether the trustees have
had regard to the guidance
issued by the Charity
Commission on public
benefit		 Para 1.18 All trustees have had regard to the Charity
Commission’s guidance on public benefit.

Additional information (optional)

You may choose to include further statements where relevant about:

SORP reference
Policy on grant making Para 1.38 Lipodystrophy UK does not have a policy on
grant making, since we don’t currently offer
grants
Policy on social investment
including program related
investment		 Para 1.38 Lipodystrophy UK does not have a policy on
social investment
Contribution made by
volunteers		 Para 1.38 Lipodystrophy UK does not have a policy on
contributions made by volunteers
Other

Achievements and Performance

SORP reference

Summary of the main
achievements of the charity,
identifying the difference the
charity’s work has made to
the circumstances of its
beneficiaries and any wider
benefits to society as a
whole.		 Para 1.20 1) Instrumental in NICE HST appraisal
success - Metreleptin approved for all
eligible Lipodystrophy patients!
2) Publication including patient perspective
of living with Lipodystrophy (Gomes, A.,
et al. Experiences and Perspectives of
Patients with Non-HIV-Associated
Lipodystrophies and Their Caregivers: A
Qualitative Study. Patient 14, 673–685
(2021). https://doi.org/10.1007/
s40271-021-00511-5)
3) Published interview with Pharmaphorum
4) Ongoing virtual support for community
through COVID - live chats, community
check-ins, etc.
5) Considering volunteer positions to assist
Board (Social Media Executive and
Fundraising Officer)
6) Creating Patient Pathways survey for
patients/carers to compliment clinicians
survey - aim to produce set of best
practice guidelines
7) New website delayed by lack of copy
and requirement for a PO box so as not
to use personal address for ‘place of
business operation’ contact details -
being resolved
8) Fatigue project (in collaboration with the
Patient Lead Research Hub, PLRH, and
Addenbrookes Hospital) funding decision
delayed due to COVID. Now back on
tract, funding approved, focus group re:
data capture questions complete,
developing project plans/questionnaire
resource
9) Ongoing relationship with National
Centre of Excellence in Lipodystrophy
(Addenbrookes Hospital)
10) Ongoing patient representative on
ECLip Board
11) Ongoing relationship with the Centre of
Appearance Research (CAR)
12) Note: several activities delayed/
postponed due to COVID

Additional information (optional)

You may choose to include further statements where relevant about:

Achievements against
objectives set		 Para 1.41 Ongoing objectives to 1) raise awareness of
Lipodystrophy conditions; 2) provide
information and support to people affected
by Lipodystrophy; advocate for excellent
care and improved treatment options;
encourage research addressing the
concerns of people with Lipodystrophy
Performance of fundraising
activities against objectives
set
Para 1.41
N/A
Investment performance
against objectives
Para 1.41
N/A
Other

Financial Review

Financial Review
Review of the charity’s
financial position at the end
of the period		 Para 1.21 Low fundraising income, although sufficient
to cover charity expenditure
Statement explaining the
policy for holding reserves
stating why they are held		 Para 1.22 Lipodystrophy UK does not have a reserves
policy
Amount of reserves held Para 1.22 N/A
Reasons for holding zero
reserves		 Para 1.22 N/A
Details of fund materially in
deficit		 Para 1.24 N/A
Explanation of any
uncertainties about the
charity continuing as a going
concern		 Para 1.23 N/A

Additional information (optional)

You may choose to include further statements where relevant about:

The charity’s principal
sources of funds (including
any fundraising)		 Para 1.47 Funds exclusively from fundraising activities
Investment policy and
objectives including any
social investment policy
adopted		 Para 1.46 Lipodystrophy UK does not have an
investments policy
A description of the principal
risks facing the charity		 Para 1.46 More fundraising activities will be needed to
fund more ambitious projects in the future.
Considering recruiting a volunteer
Fundraising Officer.
Other

Structure, Governance and Management

Description of charity’s
trusts:
Type of governing document
(trust deed, royal charter)		 Para 1.25 Constitution
How is the charity
constituted?
(e.g unincorporated
association, CIO)		 Para 1.25 Charitable Incorporated Organisation
Trustee selection methods
including details of any
constitutional provisions e.g.
election to post or name of
any person or body entitled
to appoint one or more
trustees		 Para 1.25 Apart from the first charity trustees, every
trustee must be appointed by a resolution
passed at a properly convened meeting of
the charity trustees

Additional information (optional)

You may choose to include further statements where relevant about:

Policies and procedures
adopted for the induction
and training of trustees		 Para 1.51 N/A
The charity’s organisational
structure and any wider
network with which the
charity works		 Para 1.51 N/A
Relationship with any related
parties		 Para 1.51 Working in partnership with Genetic
Disorders UK for fundraising, and The
Centre for Appearance Research (CAR) as
a member of the Appearance Collective
(AC) - supporting people living with visible
differences.
Other

Reference and Administrative details

Charity name Lipodystrophy UK
Other name the charity uses LDUK - although being fazed out
Registered charity number 1175462
Charity’s principal address
29 Collington Way,
Kingston Bagpuize,
Abingdon
OX13 5GP

Names of the charity trustees who manage the charity

Trustee name Office (if any) Dates acted if not for
whole year		 Name of person (or body)
entitled to appoint trustee
(if any)
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20		 Rebecca
Sanders		 Chair N/A Rebecca Sanders
(Founder)
Rachel
Sanders		 Treasurer N/A Rebecca Sanders
(Founder)
Becky Smith N/A N/A Board majority vote
Siobhan Dunn N/A N/A Board majority vote
Claire Adams N/A N/A Board majority vote

Corporate trustees – names of the directors at the date the report was approved

Director name N/A

Name of trustees holding title to property belonging to the charity

Trustee name
Dates acted if not for whole year
N/A

Funds held as custodian trustees on behalf of others

Description of the assets
held in this capacity		 N/A
Name and objects of the
charity on whose behalf the
assets are held and how this
falls within the custodian
charity’s objects		 N/A
Details of arrangements for
safe custody and
segregation of such assets
from the charity’s own assets		 N/A

Additional information (optional)

Names and addresses of advisers (Optional information)

Names and addresses of advisers (Optional information) Names and addresses of advisers (Optional information) Names and addresses of advisers (Optional information) Names and addresses of advisers (Optional information)
Type of
adviser
Name
Address
N/A
Name of chief executive or names of senior staff members (Optional
information)
N/A

Exemptions from disclosure

Reason for non-disclosure of key personnel details

N/A

Other optional information

Declarations

The trustees declare that they have approved the trustees’ report above.

Signed on behalf of the charity’s trustees

Signature(s) Full name(s) Rebecca Sanders

Position (eg Chair Secretary, Chair, etc)

Date 30/01/2022

Lipodystrophy UK Lipodystrophy UK Lipodystrophy UK Lipodystrophy UK Lipodystrophy UK 1175462 1175462
Receipts andpayments accounts
For the period
from		 Period start date To Period end date
Oct-20 Oct-21
Section A Receipts and payments
Unrestricted
funds		 Restricted funds Endowment
funds		 Total funds
to the nearest £ to the nearest £ to the nearest £ to the nearest £
A1 Receipts
Donations 781 - - 781
Refunds 127 - - 127
Other 32 - - 32
- 0 - - -
- 0 - - -
- 0 - - -
- 0 - - -
- 0 - - -
Sub total_(Gross income for AR) _
941		 - - 941
A2 Asset and investment sales,
(see table).
- 0 - 0 - 0 -
- 0 - 0 - 0 -
Sub total
- 0		 - 0 - 0 -
**Total receipts **
941		 - 0 - 0 941
A3 Payments
Insurance 185 - - 185
Invoices 91 - - 91
- 0 - - -
- 0 - - -
- 0 - - -
- 0 - - -
- 0 - - -
- 0 - - -
- 0 - - -
**Sub total **
276		 - - 276
A4 Asset and investment
purchases,(see table)
- 0 - 0 - 0 -
- 0 - 0 - 0 -
**Sub total **
- 0		 - 0 - 0 -
**Totalpayments **
276		 - 0 - 0 276
**Net of receipts/(payments) **
665		 - - 665
A5 Transfers between funds - 0 - - -
A6 Cash funds lastyear end 6,881 - - 6,881
**Cash funds thisyear end **
7,546		 - - 7,546
Section B Statement of assets and liabilities at the end of the period
Categories Details Unrestricted
funds		 Restricted funds
to nearest £ to nearest £
B1 Cash funds Bank Account 7,387 -
- -

CCXX R1 accounts (SS)

30/01/2022

1

- -
Total cash funds 7,387 -
(agree balances with receipts and payments
account(s))		 Agreement Error
Unrestricted
funds		 Restricted funds
Details to nearest £ to nearest £
B2 Other monetary assets - -
- -
- -
- -
- -
- -
Details Fund to which asset
belongs		 Cost (optional)
B3 Investment assets -
-
-
-
-
Details Fund to which asset
belongs		 Cost (optional)
B4 Assets retained for the
charity’s own use		 -
-
-
-
-
-
-
-
-
Details Fund to which
liability relates		 Amount due
(optional)
B5 Liabilities -
-
-
-
-
Signed by one or two trustees on behalf
of all the trustees		 Signature Print Name
Rachel Sanders Rachel Sanders

CCXX R2 accounts (SS)

30/01/2022

2

CC16a Last year to the nearest £ - - - - - - - - - - 0 - 0 - 0 - - - - - - - - - - - 0 - 0 - - - - Endowment funds to nearest £ - -

CCXX R3 accounts (SS)

30/01/2022

3

- OK Endowment funds to nearest £ - - - - - - Current value (optional) - - - - - Current value (optional) - - - - - - - - - When due (optional)

Date of approval

12/11/21

CCXX R4 accounts (SS)

30/01/2022

4