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) |
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| Date of approval |
|||
| REBECCA SANDERS | 04/01/2026 | ||
CCXX R2 accounts (SS)
2