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2024-12-31-accounts

Trustees’ annual report (including Directors’ report) for the period From: Period start date 01/01/2024 To: Period end date 31/12/2024 Charity name: Hypermobility Syndromes Association (working name: HMSA) Charity registration number: 1186735

Company number: n/a

Objectives and activities

SORP reference
Summary of the purposes of
the charity as set out in its
governing document
Para 1.17 We support all hypermobile people and the
professionals who work with them.
The object of the Hypermobility Syndromes Association,
as set out in our governing document, is to preserve
and protect good health, and support the needs of
people affected by Hypermobility Syndromes, by:
• Providing validation, education, rehabilitation
and positive self-management advice for people
with hypermobility related disorders and their
entire support network, including their families,
teachers, friends and colleagues. Encouraging a
culture of support while raising awareness,
knowledge and self-determination.
• Improving the quality of life, and enabling
effective self-management for affected
individuals through a variety of resources,
including (but not limited to): self-management
programs, support groups, social media,
publications, helpline and support from our
expert patient volunteers.
• Working with and educating the relevant
medical, social and health professionals in
developing awareness and understanding of the
biopsychosocial impact of hypermobility related
disorders for individuals and their entire support
network.
• Supporting and encouraging individuals in their
pursuit of diagnosis and treatment,via
signposting to appropriate services where
necessary.
• Providing an environment which enables people
affected by a hypermobility syndrome to
volunteer, furthering the charity’s aims whilst
developing their own workplace skills and
confidence.
• Working with other organisations to undertake
and promote research into hypermobility
related disorders, the useful results of which will
be published for the public benefit. To seek to
be the patient partner and to disseminate
research, surveys and investigations whilst
maintaining our high standard of information.
• Collaborating with other organisations on
policies, strategies and projects, which are
synergistic with the CIO’s own strategy and
values.
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
The HMSA’s main activities include:
Provision of evidence-based resources,
information and supportto anyone affected by
hypermobility and the professionals and that
support them to promote self-management,
informed care, and improved quality of life.
Free support given via helpline, email and
social mediaoffering signposting, validation,
and guidance to individuals seeking diagnosis,
treatment, or day-to-day management
strategies.
Running our membership schemeto provide
extra, tailored support for the hypermobile
community promoting self-management, peer
connection, and access to exclusive educational
resources.
Regional groups providing additional peer to
peer supportfor members fostering community,
shared experience, and practical advice for living
with hypermobility-related disorders.
Bi-annual production of journalfor members
featuring expert articles, lived experience
stories, and research updates to educate,
empower, and inform the hypermobile
community.
Organising and leading regular eventsfor both
professionals and those affected by
hypermobility to share knowledge and promote
bestpractices in care and self-management.
Running thriving social media feedsto raise
awareness of hypermobility and the HMSA and
to provide timely, accessible information and
support.
Working closely with our group of Clinical
Advisors to ensure our resources and guidance
reflect current best practice and support both
individuals and professionals.
Delivering the HMSA Professional Educational
Model and wider professional education,
including tools like the HMSA Clinicians Guide
Quick Reference Poster, to improve recognition,
diagnosis, and management of hypermobility-
related disorders and support individuals in
accessing appropriate care
Contributing to and keeping abreast of the
latest research,supporting multiple research
projects, assisting researchers in finding
participants and disseminating results to benefit
the wider community.

Liaising with, working in partnership or
alongside other relevant partnerssuch as
ARMA, Mast Cell Action, EDS Support UK or
PoTS UK, to strengthen advocacy, research and
service development aligned with our values.
Enabling volunteers to contribute their own
skills and lived experiencein support of the
charity’s aims, while also offering opportunities
to learn from peers and develop new
capabilities.
Statement confirming
whether the trustees have
had regard to the guidance
issued by the Charity
Commission on public
benefit
Para 1.18 The Hypermobility Syndromes Association’s board takes
seriously the Charity Commission’s guidance on public
benefit. All our activities are relevant to improving
health outcomes, wellbeing, and support for people
with hypermobility in line with our charitable purposes
stated above.

Additional information (optional)

You may choose to include further statements where relevant about:

SORP reference
Policy on grant making Para 1.38 n/a
Policy on social investment
including program related
investment
Para 1.38 n/a
Contribution made by
volunteers
Para 1.38 Our team of around 40 volunteers make a vital
contribution to the work of the Hypermobility
Syndromes Association (HMSA). Almost all our
volunteers live with hypermobility, and we see it as

essential that the charity is truly led by people from within our community of need. Our volunteers genuinely understand hypermobility syndromes and have daily lived experience and are empowered to shape the support, advice and solutions we provide. Their lived experience and insight, combined with an ethos of practical self-management, enables the HMSA to provide validation, support, and practical advice that cannot come from theoretical understanding alone. The composition of our trustee board, staff and wider volunteer team all demonstrate the value we place on being led by lived experience. We do a huge amount with very limited resources thanks to our amazing volunteers who cover a wide range of roles from social media, to fundraising, to running local groups providing peer-led support, to editing our journal, to supporting and leading our work with professionals. Through these roles, many volunteers gain valuable experience, build confidence, and develop transferable skills. “It makes me feel I belong. After years being supported by the HMSA, I can now give something back.” “ I absolutely adore volunteering for them, and I hope to continue to do so for many more years to come... I am passionate about empowering the audience with knowledge to self-manage better” “I believe it's vital for the voices of people who have hypermobility to be heard and valued - in everything the HMSA does and in its own board and organisation. I've met people with a wide range of backgrounds and experiences since becoming a Trustee. Hearing their stories and seeing how these stories can support and improve other people's lives is one of the best parts about being a Trustee” We are also extremely lucky to have a voluntary group of Clinical Advisors, led by Dr Philip Bull, who bring expertise, skills and knowledge across a range of specialist fields relevant to hypermobility ensuring that the information we provide is up to date, rigorously checked and comprehensive. The HMSA is run by 2 paid, part-time staff whose total Other hours do not equate to 1 full-time role. Both paid members of staff also live with hypermobility. All other work is carried out by volunteers.

Achievements and performance

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 The HMSA is here to support_everyone_with
symptomatic hypermobility, whatever the cause, and
however mildly or severely they may be affected.
We promote a holistic, solution-focussed approach to
living well, providing self-management tools and
support including:
• Patient Support Groups
• Education Programmes
• Information and Advice for hypermobile people
• Evidence-based information and advice for
healthcare professionals
Our mission:
Improving the quality of life for everyone affected by
symptomatic hypermobility by:
• accelerating access to timely and accurate
diagnosis;
• promoting awareness and understanding
amongst professionals to support better care;
• providing validation, support and practical self-
management tools from a community who truly
understands
Our vision:everyone affected by symptomatic
hypermobility is able to access the care, support and
advice they need – from both peers and professionals.
Our Values:Empowering, inclusive, collaborative,
community-led, trustworthy.
“The Hypermobility Syndromes Association … has
done more for me than any other organisation or
appointment to help me manage my symptoms, feel
heard and to improve the quality of my everyday life”
(member)
With the NHS continuing to be under extreme pressure,
with waiting lists still growing, we help to reduce the
burden on statutory services by delivering support
when it was not available elsewhere. This is especially
important as on average it takes 10 years for
hypermobility syndromes to be diagnosed.
As a small charity led by people with lived experience,
we are able to be very agile and quickly pivot our
services to provide the expert, specialist services our
members, the professionals who support them and the
wider hypermobile community need.
We have continued to build on the patient events we
offer on a wide range of topics from nutrition to
exercise to pain management to help people with
hypermobilityself-manage their condition better,so

they are able to live well. Session content was shaped by feedback from members and volunteers. This series of events has been extremely well attended and received with over 2200 people registering for live events – with many more watching them on playback. A threefold increase on attendance from last year, shows the growing need and demand for these sessions. “It's good to know we are not alone. I'm learning all the time and since I joined the organization I feel more confident helping my Granddaughter...” “Absolutely amazing. I look forward to more sessions in the future to help me develop my own resilience within my hypermobility.” “Very good information provided in an understandable format.” (Post event feedback) For a charity staffed mainly by volunteers, many with their own health needs, this level of service provision when services are so stretched is vital and is a major achievement. “ The information given was very useful and personalised to my questions. Jo's delivery is fantastic and her communication skills are brilliant. I felt very much at ease. (Feedback about our support.) The ‘Living Well with Hypermobility’ 5 week course for members at the start of the year was also a great success again and was extremely well attended with excellent feedback. The sessions included: Anxiety and mental health; Pain management; Sleep management; Weight management and an open Q&A session. Feedback given from participants post sessions told us: • “They're really good at getting trusted information to the public / patients, who would struggle to find it elsewhere.” • “Just vital for us. Please continue forever!!! (with pacing of course) . Thanks” • “Excellent session wish I had had this years ago. I will go pass on what I have learnt to my 3 adult daughters all of whom have these issues too as well as myself. Cannot thank you enough.”

We also run a helpline and deliver online support, offering validation, signposting and practical advice. • “Thank you. No one else has understood or listened or helped me like you have.” (Helpline feedback) • “Thank you so much. No one else understood and not only have I been heard, I’ve been helped with practical advice.” (Helpline feedback) As well as offering support via a wide range of sessions and events including weekly online relaxation classes to support wellbeing, we also run monthly online ‘ask the Occupational Therapist’ sessions which are free and open to all. Feedback after ‘Ask the OT’ session: “ I love ALL of these sessions .please continue. They are vital for my health.” “I cannot wait to attend more sessions. “" Calm, friendly, constructive approach " Additionally, our local regional groups successfully continued their transition to hybrid delivery providing much needed support, connection and information for our members with regional groups regularly running. In response to feedback, we have also started to offer national online support groups that focus on specific issues. Feedback stresses the importance of sharing and support within a community of peers that understand. Feedback: “…The feeling of community and being with people who understand is so important.” “Community - a group of people who understand and not being preached too by a healthcare professional who doesn’t get it” Our social media team continued to be very active in raising awareness and providing information not only about hypermobility but also a wide range of related conditions. Over 500 individuals were supported with 1:1 advice and support via Facebook or online enquiries, in addition to the very high levels of public engagement with our posts. For a small charity, our reach on social media which continues to grow (c.50k on Facebook, c. 12k on twitter and 3k on Instagram) continues to be impressive. Additional help was provided by our trained helpline team led by volunteers helping to support over 800 more people via email, online and phone.

During 2024, we continued to work closely in partnership with relevant charities in the field. Together we worked hard behind the scenes to ensure that key hypermobility services remain open and that more healthcare professionals are better informed about hypermobility. This important work is necessary so that patients can access earlier diagnosis as well as better support in their local area in the future. We liaised with a wide range of clinicians and attended some key events such as the British Society of Rheumatologists’ Annual Conference in Liverpool attended by over 2000 professionals. Supported by volunteers and our Lead Clinical Advisor, Dr Philip Bull, we spoke directly to hundreds of professionals, delivered a very well-attended presentation and shared new resources. Many of the key achievements in 2024 were ensuring that the HMSA was continuing to build the foundations for future growth and development. Significant progress was made in reviewing and stabilising the financial position, helping to sustain and develop the charity’s work. The board and CEO reviewed the charity’s strategy and future plans. The key priority for the short-term remains on raising vital funds so that the charity can extend and further develop its work. We were pleased to receive an Awards for All grant from The National Lottery Community Fund. This will help us to run a national awareness event with a range of sessions to reach more people, and offer advice, support and resources in June 2025 – sessions will be led by both clinical experts and those with lived experience on how to manage symptoms and will be an opportunity for the whole community to come together to learn and share. We would like to thank The National Lottery Community Fund for making this possible. Key changes: After years of fantastic service and contributions – particularly with strategy development – Gil Hilleard retired from the board. The HMSA is indebted to the support and expertise Gil provided and we extend our thanks to him for all that he has done to strengthen and develop the charity. We are lucky to have a strong trustee board and the varied skills and very extensive experience that they jointly bring means that the charity is fully able to meet any challenges ahead while continuing to shape and develop the HMSA’s future strategy.

We are also pleased to confirm the reappointment of Rachel King, Nichola Gardner, Zoe Lomax, and Mark Austin (Chair) for a further three-year term. We are deeply grateful to them and to the entire board for their continued commitment, insight, and leadership.

Financial review

Financial review
Review of the charity’s
financial position at the end
of the period
Para 1.21 See financial information attached.
Income for period: £44,301, split between £34,551 of
unrestricted funds and £9,750 of restricted funds.
Expenditure for period: £35,943, split between £35,675
of unrestricted funds and £268 of restricted funds.
Unrestricted funds at year end: £11,998; Restricted
funds at year end: £9,482.
Total funds atyear end: £21,480.
Statement explaining the
policy for holding reserves
stating why they are held
Para 1.22 The charity aims to keep around 3 months in reserves
up to a maximum of 6 months. This allows us to
manage smoothly any month-on-month
income/expenditure and cash flow variations as these
can have a greater impact on a small charity. In
determining appropriate reserves levels, our reserves
policy takes into account the size of the charity and its
sources of funding and also follows the Charity
Commission Guidance that recommends we consider
the following when determining reserves levels:

“plans for the maintenance of essential services
for beneficiaries”

“the risks of unplanned closure associated with
the charity’s business model, spending
commitments, potential liabilities and financial
forecasts”

“addresses the risks of unplanned closure on
their beneficiaries (in particular, vulnerable
beneficiaries), staff and volunteers”
Reserves are actively considered as part of our financial
planning and cash flow monitoring, ensuring we
maintain a sustainable and responsive approach to
managing our resources. In this way, trustees can
ensure that we prevent the build-up of excess reserves
or of reserves being unexpectedly or rapidly depleted.
Amount of reserves held Para 1.22 £11,998. This amounts to just over 4 months of
unrestricted expenditure, based on the 2024
expenditure.
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 The HMSA’s principal sources of income are fundraising,
membership, and grant income.
We would like to thank everyone who supported the
HMSA in 2024.
Investment policy and
objectives including any
social investment policy
adopted
Para 1.46 n/a
A description of the principal
risks facing the charity
Para 1.46 There are no immediate risks causing undue concern.
However, the trustees take risk management seriously
and the trustees maintain a risk register, which is
reviewed periodically at trustee meetings. The risk
register outlines key risks (e.g. financial, IT, operational,
safeguarding) and ensures that any action needed to
ameliorate risks is taken promptly and on the basis of
full information. The Finance Committee regularly
reviews the charity’s financial position. Internal control
risks are minimised by the implementation of
procedures for the authorisation of all financial
transactions.
Other

Structure, governance and management

Description of charity’s
trusts:
n/a
Type of governing document:
for example,trust deed,
memorandum and articles of
association etc
Para 1.25 Constitution
How is the charity
constituted?
for example limited company,
unincorporated association,
CIO
Para 1.25 CIO
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 Trustees are appointed in accordance with the charity’s
governing document. All trustee vacancies are
advertised. New trustees are nominated and approved
by the existing board, subject to a majority vote.

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 References, and detailed checks are provided before
trustees start. As a small charity, the HMSA takes a
practical approach to trustee induction. New trustees
are given key documents such as the governing
document, recent minutes and financial information, a
trustee Handbook, code of conduct and relevant
policies to help them understand the charities work and
their responsibilities.
Induction is supported by existing trustees and the CEO
who share knowledge and provide guidance as needed.
As members of the National Council for Voluntary
Organisations (NCVO), we encourage trustees to access
NCVO’s resources and training opportunities. Trustees
are also signposted to the Charity Commission’s
guidance for trustees to support their understanding of
governance and legal duties.
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 n/a
Other n/a

Reference and administrative details

Charity name The Hypermobility Syndromes Association
Other name the charity uses HMSA
Registered charity number CIO 19863
Charity’s principal address 49 Greek Street, London W1D 4EG

Names of the charity trustees who manage the charity

1
2
3
4
Trustee name Office (if any) Dates acted if not for whole year Name of person (or
body) entitled to
appoint trustee (if
any)
Rachel King Trustee From December 2020 -present
Gil Hilleard Trustee From June 2021 – December
2024
Nichola Gardner Trustee From May2021 -present
Zoe Lomax Trustee From May2021 -present
5
6
7
8
9
10
11
12
13
14
15
16
Mark Austin Trustee(Chair) From December 2021 -present
Zoe Walker Trustee From March 2022 – March 2025
Tia Cheang Trustee From August 2023 -present

– 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

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)
Type of
adviser
Name
Address
Name of chief executive or names of senior staff members (optional information)
Lisa Bone, CEO

Lisa Bone, CEO

Exemptions from disclosure

Reason for non-disclosure of key personnel details

N/A

Other optional information

None

Declarations

The company has taken advantage of the small companies’ exemption in preparing the report above.

The trustees declare that they have approved the trustees’ report (including directors’ report) above.

Signed on behalf of the charity’s trustees/directors

Signature(s) Full name(s) Mark Austin Position (for example Chair Secretary, Chair, etc) Date 5-8-25

Independent examiner's report on the accounts

Section A Independent Examiner’s Report Report to the trustees/ Hypermobility Syndromes Association members of On accounts for the year 31 December 2024 Charity no 1186735 ended (if any) Set out on pages 16-17 (remember to include the page numbers of additional sheets)

I report to the trustees on my examination of the accounts of the above charity (“the Trust”) for the year ended 31/12/2024 .

I report in respect of my examination of the Trust’s accounts carried out under section 145 of the 2011 Act and in carrying out my examination, I have followed the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act.

Independent examiner's statement

I have completed my examination. I confirm that no material matters have come to my attention in connection with the examination which gives me cause to believe that in, any material respect:

I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in order to enable a proper understanding of the accounts to be reached.

Signed: Date: 11/8/25 Name: Virginia Santer Relevant professional ACCA qualification(s) or body (if any): Address: Monetaire Accountants Limited, Sovereign House 22 Shelley Road, Worthing, BN11 1TU

Section B Disclosure

Only complete if the examiner needs to highlight matters of concern (see CC32, Independent examination of charity accounts: directions and guidance for examiners).

1

October 2018

IER

Give here brief details of any items that the examiner wishes to disclose .

2

October 2018

IER

Hypermobility Syndromes Association 1186735 Receipts and payments accounts CC16a For the period 1/1/2024 12/31/2024 To from

Section A Receipts and payments

Section A Receipts and payments
Hypermobility Syndromes Association
1186735
CC16a
Receipts and payments accounts
For the period
from
1/1/2024
To
12/31/2024
Section A Receipts and payments
Hypermobility Syndromes Association
1186735
CC16a
Receipts and payments accounts
For the period
from
1/1/2024
To
12/31/2024
Section A Receipts and payments
Hypermobility Syndromes Association
1186735
CC16a
Receipts and payments accounts
For the period
from
1/1/2024
To
12/31/2024
Section A Receipts and payments
Hypermobility Syndromes Association
1186735
CC16a
Receipts and payments accounts
For the period
from
1/1/2024
To
12/31/2024
Section A Receipts and payments
Hypermobility Syndromes Association
1186735
CC16a
Receipts and payments accounts
For the period
from
1/1/2024
To
12/31/2024
Section A Receipts and payments
Hypermobility Syndromes Association
1186735
CC16a
Receipts and payments accounts
For the period
from
1/1/2024
To
12/31/2024
Section A Receipts and payments
Hypermobility Syndromes Association
1186735
CC16a
Receipts and payments accounts
For the period
from
1/1/2024
To
12/31/2024
Section A Receipts and payments
Hypermobility Syndromes Association
1186735
CC16a
Receipts and payments accounts
For the period
from
1/1/2024
To
12/31/2024
CC16a
Unrestricted
funds
to the nearest
£
A1 Receipts
Restricted
funds
to the nearest £
Endowment
funds
to the nearest £
Total funds
to the nearest £
7,458
10,750
22,598
3,195
300
-
-
-
44,301
Last year
to the nearest £
Donations and Legacies 7,458 - - 7,458 9,265
Grants 1,000 9,750 - 10,750 1,000
Charitable Activities 22,598 - - 22,598 19,760
Sales and Trading 3,195 - - 3,195 4,243
Bank Interest 300 - - 300 227
- - - - -
- - - - -
- - - - -
Sub total(Gross income for
AR)
34,551 9,750 - 44,301 34,495
A2 Asset and investment
sales, (see table).
-
-
-
44,301
- - - -
- - - - -
Sub total
Total receipts
- - - - -
34,551 9,750 - 34,495
A3 Payments
Charitable Activities 34,691 268 - 34,959 37,392
Governance Costs 984 - 984 515
- - - - -
- - - - -
- - - - -
- - - - -
- - - - -
- - - - -
- - - - -
Sub total 35,675 268 - 35,943 37,907
A4 Asset and investment
purchases, (see table)
-
-
-
35,943
8,358
-
13,122
21,480
- - - -
- - - -
Sub total
Total payments
Net of receipts/(payments)
A5 Transfers between funds
A6 Cash funds last year end
Cash funds this year end
- - - - -
- 37,907
-
1,124
9,482 - 8,358 -
3,412
- - - - -
13,122 - 13,122
21,480
16,534
11,998 9,482 - 13,122

Section B Statement of assets and liabilities at the end of the period

Categories Details Details Unrestricted
funds
to nearest £
Restricted
funds
to nearest £
Restricted
funds
to nearest £
Endowment
funds
to nearest £
funds Bank 10,314 9,482 -

B1 Cash funds

Paypal 1,643 - -
Go Cardless 41 - -
11,998 9,482 -
(agree balances with receipts and payments
account(s))
Details
OK
Unrestricted
funds
to nearest £
OK
Restricted
funds
to nearest £
OK
Endowment
funds
to nearest £
B2 Other monetary assets - - -
- - -
- - -
- - -
- - -
- - -
Current value
(optional)
B3 Investment assets -
-
-
-
-
Current value
(optional)
B4 Assets retained for the
charity’s own use
-
-
-
-
-
-
-
-
-
When due
(optional)
B5 Liabilities Accountancy
Signed by one or two trustees on
behalf of all the trustees
Date of
approval