## **Trustees’ Annual Report for the period** **From 31 Oct 2024 Period start date To 30 Oct 2025 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;
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|- Patient support activities online
- Raising awareness (World Lipodystrophy
Day, conferences, publications, social
media, focus groups)
- Advocacy (Part of Global Patient Leaders
group, Patient resources, Clinician
discussions and relationship building)| |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) Fully funded Patient Support Day for
WLD 2025. An in-person, all day event
with a full agenda of speakers to help
educate, raise awareness, provide
information and resources and
opportunities for social networking. This
event was the highlight of the year,
hugely successful with fantastic
feedback from delegates. We funded
food, transport and accommodation to
make the event accessible for all.
2) New Trustees joined the Board
(Vanessa Kill, Catherine Ellison)
3) Patient resources being developed as
part of Global Patient Leaders group in
collaboration with Amryt Pharma.
4) Ongoing awareness activities – World
Lipodystrophy Day, Rare Disease Day
5) Collaboration with Physicians, Pharma
and other Patient Group Leaders
(Global Patient Leaders group) on
development of new resources.
6) Several new resources added to our
website, including patient story videos
7) Chair gave several awareness talks at
different conferences and participated in
focus groups with stakeholders
8) Ongoing individual patient support, ad
hoc
9) Ongoing relationship with National
Centre of Excellence in Lipodystrophy
(Addenbrookes Hospital)
10) Ongoing patient representative on
ECLip Board (re-elected). Stepped
down in October 2025 after more than
5-years.
11) Ongoing relationship with the Centre of
AppearanceResearch(CAR)| **Additional information (optional)** You may choose to include further statements where relevant about: Ongoing objectives to 1) raise awareness of Lipodystrophy conditions; 2) provide |Achievements against
objectives set|Para 1.41|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|**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 from fundraising activities and
expert consultancy fees| |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. Actively recruiting additional
volunteers| |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 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-mostly phased 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** |1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20|**Trustee name**|**Office (if any)**|**Dates acted if not for whole**
**year **|**Name of person (or body) entitled**
**to appoint trustee (ifany)**| |---|---|---|---|---| ||Rebecca Sanders|Chair|N/A|Rebecca Sanders(Founder)| ||Siobhan Dunn|N/A|N/A|Board majorityvote| ||Anna Greenaway|N/A|N/A|Board majorityvote| ||Vanessa Kill|N/A|November 2024|Board majorityvote| ||Catherine Ellison|N/A|Oct 2025|Board majorityvote| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| ## – 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 N/A held in this capacity Name and objects of the N/A charity on whose behalf the assets are held and how this falls within the custodian charity’s objects Details of arrangements for N/A safe custody and segregation of such assets from the charity’s own assets ## **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)**| |---|---|---| |**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)**
**Position (eg Secretary,**
**Chair, etc)**
**Date**||| |---|---|---| ||Rebecca Sanders|| ||
Chair|| ||04/01/2026|| ||04/01/2026|| **1175462** **Lipodystrophy UK** **Receipts and payments accounts For the period** Period start date **To from** Oct-24 **CC16a** Period end date Oct-25 ## **Section A Receipts and payments** |**A1 Receipts**|**Unrestricted**
**funds**
**to the nearest**
**£**
**2 953**
**3 360**
**-**
**-**
**-**
**-**
**-**
**-**
**6 313**
**-**
**-**
**-**
**6 313**
**185**
**25 384**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**25 569**
**-**
**-**
**-**
**25 569**
**- 19 255**
**-**
**35 965**
**16 709**|**Restricted**
**funds**
**to the nearest £**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**|**Endowment**
**funds**
**to the nearest £**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**|**Total funds**
**to the nearest £**
**2 953**
**3 360**
**-**
**-**
**-**
**-**
**-**
**-**
**6 313**
**-**
**-**
**-**
**6 313**
**185**
**25 384**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**25 569**
**-**
**-**
**-**
**25 569**
**- 19 255**|**Total funds**
**to the nearest £**
**2 953**
**3 360**
**-**
**-**
**-**
**-**
**-**
**-**
**6 313**
**-**
**-**
**-**
**6 313**
**185**
**25 384**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**25 569**
**-**
**-**
**-**
**25 569**
**- 19 255**|**Last year**
**to the nearest £**| |---|---|---|---|---|---|---| |Donations|**2 953**|||||**-**| |ConsultancyFee|**3 360**|||||**-**| ||**-**|||||**-**| ||**-**|||||**-**| ||**-**|||||**-**| ||**-**|||||**-**| ||**-**|||||**-**| ||**-**|||||**-**| |**_Sub total_**_(Gross income for_
_AR)_|**6 313**|||||**-**| |||||||| |**A2 Asset and investment sales,**
**(see table).**||||||| ||**-**|||||| ||**-**|||||**-**| |**_Sub total_**|**-**|||||**-**| |**_Total receipts_ **
**A3 Payments**||||||| |||||||**-**| |||||||| |Insurance|**185**|||||**-**| |Invoice|**25 384**|||||**-**| ||**-**|||||**-**| ||**-**|||||**-**| ||**-**|||||**-**| ||**-**|||||**-**| ||**-**|||||**-**| ||**-**|||||**-**| ||**-**|||||**-**| |**_Sub total_ **|**25 569**|||||**-**| |||||||| |**A4 Asset and investment**
**purchases, (see table)**||||||| ||**-**|||||| ||**-**|||||| |**_Sub total_ **|**-**|||||**-**| |**_Total payments_**
**_Net of receipts/(payments)_**
**A5 Transfers between funds**
**A6 Cash funds last year end**
**_Cash funds this year end_**||||||| |||||||**-**| |||||||| ||**- 19 255**|**-**|**-**|**- 19 255**||**-**| ||**-**|**-**|**-**|**-**||**-**| ||**35 965**|**-**|**-**|**35 965**||**-**| ||**16 709**|**-**|**-**|**16 709**||**-**| CCXX R1 accounts (SS) 1 ## **Section B Statement of assets and liabilities at the end of the period** |**Categories**
Signed by one or two trustees on
behalf of all the trustees
**B5 Liabilities**
**B3 Investment assets**
**B2 Other monetary assets**
**B4 Assets retained for the**
**charity’s own use**
**B1 Cash funds**|**Details**
**Details**
**_Total cash funds_**
(agree balances with receipts and payments
account(s))
Bank account
**Details**
**Details**
**Details**
Signature|**Unrestricted**
**funds**
**Restricted**
**funds**
**to nearest £**
**to nearest £**
**16 709**
**-**
**-**
**-**
**-**
**-**
**16 709**
**-**
OK
OK
**Unrestricted**
**funds**
**Restricted**
**funds**
**to nearest £**
**to nearest £**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**Fund to which**
**asset belongs**
**Cost (optional)**
**-**
**-**
**-**
**-**
**-**
**Fund to which**
**asset belongs**
**Cost (optional)**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**Fund to which**
**liability relates**
**Amount due**
**(optional)**
**-**
**-**
**-**
**-**
**-**
Print Name
REBECCA SANDERS|**Endowment**
**funds**
**to nearest £**| |---|---|---|---| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||OK| ||||**Endowment**
**funds**
**to nearest £**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**Current value**
**(optional)**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**Current value**
**(optional)**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**When due**
**(optional)**| ||||| ||||| ||||| ||||| ||||| ||||| ||||Date of
approval| |||REBECCA SANDERS|04/01/2026| ||||| CCXX R2 accounts (SS) 2