2023-10-26-accounts - Lipodystrophy UK

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Trustees’ Annual Report for the period

From 31 Oct 2022 Period start date To 30 Oct 2023 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 in person and online - Raising awareness (World Lipodystrophy Day, conferences, publications, social media, focus groups) - Advocacy (Part of Global Patient Leaders group, Patient Journey 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
	Para 1.38	Lipodystrophy UK does not have a policy on social investment

Policy on social investment including program related 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 2023. 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) Patient Journey resources being developed as part of Global Patient Leaders group in collaboration with Amryt Pharma. 3) Ongoing awareness activities – World Lipodystrophy Day, Rare Disease Day 4) Collaboration with Physicians, Pharma and other Patient Group Leaders (Global Patient Leaders group) on development of Patient Journey resources to support equality in treatment. 5) Chair gave several awareness talks at different conferences and participated in focus groups with stakeholders 6) Ongoing individual patient support, ad hoc 7) Ongoing relationship with National Centre of Excellence in Lipodystrophy (Addenbrookes Hospital) 8) Ongoing patient representative on ECLip Board (re-elected) 9) Ongoing relationship with the Centre of Appearance Research (CAR)

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	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

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)
BeckySmith	N/A	N/A	Board majorityvote
Siobhan Dunn	N/A	N/A	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

CC16a Period end date Oct-23

For the period Period start date To from Oct-22

Section A Receipts and payments

A1 Receipts	Unrestricted funds to the nearest £ 2 328 26 876 - - - - - - 29 204 - - - 29 204 185 26 954 - - - - - - - 27 139 - - - 27 139 2 065 - 6 871 8 936	Restricted funds to the nearest £ - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -	Endowment funds to the nearest £ - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -	Total funds to the nearest £ 2 328 26 876 - - - - - - 29 204 - - - 29 204 185 26 954 - - - - - - - 27 139 - - - 27 139 2 065	Last year to the nearest £
Donations	2 328				-
ConsultancyFee	26 876				-
	-				-
	-				-
	-				-
	-				-
	-				-
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*Sub total*(Gross income for AR)	29 204				-

A2 Asset and investment sales, (see table).
	-
	-				-
*Sub total*	-				-
*Total receipts* A3 Payments
					-

Insurance	185				-
Invoice	26 954				-
	-				-
	-				-
	-				-
	-				-
	-				-
	-				-
	-				-
**Sub total **	27 139				-

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*
					-

	2 065	-	-	2 065	-
	-	-	-	-	-
	6 871	-	-	6 871	-
	8 936	-	-	8 936	-

CCXX R1 accounts (SS)

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 £ 8 936 - - - - - 8 936 - 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)
			-
			-
			-
			-
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			Current value (optional)
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			When due (optional)






			Date of approval
		REBECCA SANDERS	04/01/2026

CCXX R2 accounts (SS)

Lipodystrophy UK a1(elle¥s %iJp[IDrt Independent Examiner's Report to the Tru.stees of Lipodystrophy UK Charity number.. 1175462 Report on the accounts for the year ended Oct 2023 I report to the trustees on my examination ofthe accounts of Lipodystrophy UK for the year ended Oct 2023. Responsibilitie5 and basis ol report As the charity's trustees. you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011. I report in respect of my examination of the chariry's accounts carried out under section 145 uf the Charities ALt 2011, and in carrying out my examinafion, I have followed the applicable directions given by the Charity Cornmission. Independent examiner's statement I have examined the accounts of Llpodystrophy UK for the yearended Oct 2023, which Lomprise a receipts and payments account and a statement of assets and Ilablllties. My examination was carried out in accordance with the Charity Commission's guidance on independent examination. An examination includes a review ofthe accounting records kept by the charity and a Lomparison of the accounts presented with those records. It also includes consideration of any unusual items or disclosures in the accounts and seeking explanations from the trustees concerning such matters. Independent examiner's conclusion On the basis of my examination, I have not become aware of any matter which gives me reasonable cause to believe that in any mdtL'rial respect: The accounting records woro not kept in accordance with section 130 of the Charities Act 2011,. or The accounts do nnt accord with the accounting records. or The accounts do not comply with the applicable requirements of the Charities Act 2011. I have no matters to report in relation to those matters set out in section 145(5) ofthe Charities Act 2011. Name: lullane Ober-Blobaum Signature: Date: i('lJ dL, Independent Examinerfs address: 4 Hazel Gardens OXII 6DF Didcot Oxtordshire, UK www.lipodystrophyulLorg Lipodystrophy UK Registered Charity- 1175462