## **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