## **Trustees’ Annual Report for the period**
**From** 01/02/2020 **Period start date To** 31/01/2021 **Period end date**
**Charity name:** XLH UK
## **Charity registration number:** 1182964
## **Objectives and Activities**
||SORP
reference||
|---|---|---|
|Summary of the purposes of
the charity as set out in its
governing document|Para 1.17|The preservation of good health among
sufferers of x-linked hypophosphatemia and
related disorders by: a) supporting research
for the public benefit into the causes,
prevention, diagnosis and methods of
treatment of x-linked hypophosphatemia and
related disorders and publishing the useful
results of that research; b) provision of a
support network for families suffering from
the effects of x-linked hypophosphatemia
and related disorders; c) advocating early
diagnosis and well-managed treatment of x-
linked hypophosphatemia and related
disorders.|
|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.||**XLH UK**
XLH UK exists to inform and support XLH
patients internationally, with a primary focus
on those in the UK. XLH UK participated in
the first of many Rare Bone Alliance
meetings in collaboration with the Brittle
Bone Society, Fibrous Dysplasia Society UK
and Soft Bones UK in order to improve
services for those with rare bone disorders.
These include clearer guidance on disability
assessments, improving diagnosis through
GPs and new-born health visitor training
information as well as focusing on transition
care.
XLH UK assisted with further clarifications
with health care assessors in Merchants
House of Glasgow for the Scottish Medicines
Consortium. We are delighted to have been|
involved in the decision making that ultimately recommends new therapy for use with children with XLH in Scotland. XLH UK collaborated with Ando (the Portuguese patient organisation that supports those with Achondroplasia and XLH) and the International XLH Alliance on an informative XLH video that is now available for those to learn more about XLH in a video format. In a response to further celebrate the Rare Disease Day, we collaborated with Media Planet UK to work with them on an article for the New Scientist magazine and online which allowed XLH UK to highlight to a new audience the complexities of treatment and the need for early and routine care. Sally Hatton shared her unique perspective on how her challenges with XLH an often with other rare diseases are sometimes not immediately obvious. The #IAmNumber17 campaign provided a critical platform for the patient voice allowing those with rare diseases to be heard. The participation involved both online, printed, and formal launch at an exhibition in London. XLH UK played a key role in bringing together clinicians, patient group leaders and patients to launch the paper on the unrecognised burden of XLH in adults though a webinar and streamed for free online. This event provided information on the unmet needs of adults with XLH, and gave evidence on current and future approaches to treatment and research in adult care. Our stakeholders debated ideas to support our call to action to improve the lives of adults with XLH. XLH UK held a session on XLH in collaboration with Metabolic Support UK where we had an opportunity to talk to patients, carers, and families on the vision of XLH UK and the key challenges and strategies. **International XLH Alliance**
|||The International XLH Alliance is an informal
group that brings together XLH patient
organisations from around the world. XLH
UK is a founding member of the International
XLH Alliance.
It amplifies the patient voice of XLH and related
disorders, to set a global multi-disciplinary
standard of care and research that could not be
achieved independently, to ensure that all
patients’ management is the same.
In January 2020, XLH UK opened a new
account within XLH UK bank account that is
solely for restricted funds for the purpose of
International XLH Alliance activities.|
|---|---|---|
|Statement confirming
whether the trustees have
had regard to the guidance
issued by the Charity
Commission on public
benefit|Para 1.18|In planning the activities of the charity the
trustees' have regard to the guidance on
public benefit issued by the Charity
Commission.|
|**Additional information (optional)**
You may choose to include further statements where relevant about:|**Additional information (optional)**
You may choose to include further statements where relevant about:|**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|Special contributions have been made by Dr
Kassim Javaid, Dr Moira Cheung, Prof
Richard Keen, Dr Nick Shaw, Sebastian
Gardiner, Jean Mossman, Inês Alves,Dr.
Karl Insogna, Dr. Peter Kamenicky, Pol|
Harvengt, Eric Low, Tenna Toft Sylvest, Elizabeth Olear and Ingunn Westerheim. XLH UK policy on working with pharmaceutical and medical device Other companies: https://xlhuk.org/xlh-uk-policy-on-workingwith-pharmaceutical-and-medical-devicecompanies/
## **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|2020 saw a critical time for XLH UK to
represent the patients, their families and
carers in two key areas 1) working with
healthcare assessors to ensure the patient
voice is heard as they better understand the
impact XLH has on individuals and the family
unit. Healthcare assessors in Ireland now
recommend burosumab for children and
young adults with growing bones changing
the lives of those individuals mitigating the
need for complex surgeries and many of the
difficulties that adults with XLH live with. 2)
With the challenging and complex nature to
adjust our way of working due to COVID-19
restrictions, we moved with a greater
emphasis to working collaboratively, learning
from other organisations and holding digital
based events.
International XLH Alliance successfully
applied for a key unrestricted grant that it
received in August 2020 which will be critical
for the International XLH Alliance to execute
on its objectives and promise that will
continue to benefit society as a whole.|
## **Financial Review**
|Review of the charity’s
financial position at the end
of the period|Para 1.21|Despite the global pandemic (COVID-19),
the charity has had a critical membership
growth year as well as being involved in key
strategic planning. During the year ended
31.01.2021 its activityhas been confined to|
|---|---|---|
|||strategy and organising. During the year it
was fortunate to receive £64,864 in
unrestricted grants from Kyowa Kirin
International. These funds have been
designated for the International XLH Alliance
use. The result has been a surplus of
Income over Expenditure of £66,149 for the
year and a closing cash of £106,943.|
|---|---|---|
|Statement explaining the
policy for holding reserves
stating why they are held|Para 1.22|Being a new charity its current policy is to
hold its cash reserves in a normal current
bank account. However, as it develops its
strategic plan in line with objectives it may
seek to hold cash reserves in normal bank
deposit accounts with the lowest risk
possible. The charity has a minimum risk
possible policy.
The charity is holding £105,989 in
accumulated reserves and is developing
plans for its use in the next two years in line
with the charity's strategic objectives and
outcome for the long-term benefit of XLH
patients.|
|Amount of reserves held|Para 1.22|£105,990|
|Reasons for holding zero
reserves|Para 1.22|not applicable|
|Details of fund materially in
deficit|Para 1.24|The charity is not in deficit.|
|Explanation of any
uncertainties about the
charity continuing as a going
concern|Para 1.23|The trustees have reviewed the charity’s
financial position and it considers that it
remains a going concern and fully able to
continue to deliver on its long-term
objectives.|
## **Structure, Governance and Management**
|Description of charity’s
trusts:|||
|---|---|---|
|Type of governing document
(trust deed, royal charter)|Para 1.25|The organisation is governed by a trust deed
dated 18 November 2017.|
|How is the charity
constituted?
(e.g unincorporated
association, CIO)|Para 1.25|The organisation is an unincorporated charity.|
Trustee selection methods Para 1.25 Trustee selection is in accordance with the including details of any charity's governing document. constitutional provisions e.g. The policy and operating decisions of the charity election to post or name of rest with the trustees' who meet regularly to any person or body entitled monitor the activities of the charity. to appoint one or more trustees
## **Reference and Administrative details**
|Charity name|XLH UK|
|---|---|
|Other name the charity uses||
|Registered charity number|1182964|
|Charity’s principal address|21 Providence Street
Greenhithe
Kent
DA9 9AA|
|||
## **Names of the charity trustees who manage the charity**
|1
2
3
4
5
6
7
8
9
10
11|**Trustee name**|**Office (if any)**|**Dates acted if not for whole**
**year**|**Nam**
**e of**
**pers**
**on**
**(or**
**body**
**)**
**entitl**
**ed to**
**appo**
**int**
**trust**
**ee (if**
**any)**|
|---|---|---|---|---|
||Oliver Gardiner|n/a|18.11.2017 -present||
||AmyLee|n/a|18.11.2017 -present||
||Nick Papé|n/a|18:11:2017 -present||
||SallyHatton|n/a|29.11.2020 -present||
||Anne Papé|n/a|29:11:2020 -present||
||Sarah Mitson|n/a|30:09:2021 -present||
||||||
||||||
||||||
||||||
||||||
12 13 14 15 16 17 18 19 20
## – 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
## **Exemptions from disclosure**
Reason for non-disclosure of key personnel details
**n/a**
## **Other optional information**
**n/a**
## **Declarations**
**The trustees declare that they have approved the trustees’ report above.**
**Signed on behalf of the charity’s trustees**
**----- Start of picture text -----**
Signature(s)
Full name(s) Oliver Gardiner
Position (eg Chair
Secretary, Chair, etc)
Date
17/10/2021
**----- End of picture text -----**
|**XLH UK - Accounts for the year ended 31/01/2021**
**£**
**2020/21**
Income
Grants - XLH UK
**1,863.38**
Grants - XLH Alliance
**64,864.00**
Other
**0.00**
Total Income
**66,727.38**
Expenses
Administration Expenses - XLH UK
**310.85**
Travel Expenses - XLH UK
**0.00**
Administration Expenses - XLH Alliance
**267.52**
Total Expenses
**578.37**
Surplus of Income over Expenditure
**66,149.01**
**£**
**2020/21**
XLH UK Funds - Bank Accounts
**42,078.77**
XLH UK Funds - Creditors
**(704.04)**
**Income & Expenditure Account**
**Statement of Assets and Liabilities**|£
2019/20
40,235.00
0.00
1.01|
|---|---|
||40,236.01|
||251.71
112.10
31.31|
||395.12|
|||
||39,840.89|
||£
2019/20
40,236.01
(363.81)|
|Net XLH UK
XLH Alliance Funds - Bank Accounts
XLH Alliance Funds - Creditors
Net XLH Alliance
**Net Assets**
Accumulated Surpluses Brought forward
Surplus in current year
**Accumulated Surpluses Carried Forward**|39,840.89
66,149.01|**41,374.73**
**64,864.00**
**(248.83)**
**64,615.17**
**105,989.90**
**105,989.90**|39,872.20
0.00
(31.31)|
|---|---|---|---|
||||(31.31)|
||||39,840.89|
||||0.00
39,840.89|
||||39,840.89|
**Page 1**
(HARITY COMMISSION
.1 FOR ENGLAND AND WALES
Independent examiner's report on the
accounts
Section A
Independent Examinerfs Report
Report to the trusteesl
members of
XLH UK
On accounts for the year
ended
31 JANUARY 2021
Charity no
(if any)
1182964
Set out on pages
I report to the trustees on my examination of the accounts of the above
charity {'Ihe Trust") for the year ended 3110112021.
Responsibilities and
basis of 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
rthe Act").
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 all the applicable Directions given by the Charity Commission
under section 14515}{b) of the Act
Independent
examiner's statement
I have completed my examination. I confirm Ihat no material matters have
come lo my attention in connection with the examination which gives me
cause to believe thal in, any material respect..
the accounting records were nol kept in accordance with section 130
of the Charities Act, or
the accounts did not accord with the accounting records, or
the accounts did not comply with the applicable requirements
conceming the form and content of accounts set out in the Charities
{Accounts and Reports) Regu181ions 2008 other than any requirement
that the accounts give a 'true and fair, view which is nol a matter
considered as part of an independenl examination.
I have no concems and have come across no other matters in connection
with the examination to which attention should be drawn in this report In
order to enable a proper understanding of the accounts to be reached.
Signed:
4è
Date:
Name:
KIM WEBB
Relevant professional
qualification{sl or body
(if any):
Address:
20 STAPLOE. ST NEOTS. CAMBRIDGESHIRE, PE19 5JA
IER
Oct 2018
Sectlon B
Dlsclosure
Only complele if the examiner needs to highlight material mallers ol coiiceir)
(see CC32, Independent examination of charity accounts". directions and
guidance for examiners}.
Give here brief details of
any items that the
examiner wishes to
disclose.
IER
Oct 2018