REGIsfERED CHARrrY NUMBER: 1083179
REPORT OF THE TRusfEES AND
UNAUDITED FINANCIAL STATEMENTS
FOR THE YEAR ENDED 31 DECEMBER 2024
FOR
DIAMOND BLACKFAN ANAEMIA SYNDROME SUPPORT GROUP UK

DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK
CONTENTS OF THE FINANCIAL sfATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024
Page
Message from the Chair, Leisa Batkin
Report of the Trustees
2to6
Independent Examiner's Report
ststement of Financial Activities
Balance Sheet
Notes to the Financial Statements
ioto13

DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK
MESSAGE FROM THE CHAI￿ LEISA BATKIN FOR THE YEAR ENDED 31 DECEMBER 2024
As Chair of DBAS UK, it is my privilege to present this, my 13th Annual Report, reflecting on our
activities, achievements, and challenges over the past year. DBAS UK remains dedicated to
supporting individuals and families affected by Diamond Blackfan Anaemia Syndrome, a rare
genetic disorder. Our mission is to provide support, fund research, and foster a sense of
community among those impacted by DBAS.
This year, we have continued to strengthen our support ne￿ork, bringing together families and
individuals affected by DBAS. Our annual conference was a significant success, providing a
platform for patients, families, and medical professionals to share experiences. access the latest
medical information, and offer mutual support. The conference also featured workshops and
sessions led by experts in the field, enhancing our community's knowledge and resilience.
DBAS UK has been at the forefront of funding innovative research projects aimed at improving
treatments and finding a cure for DBAS. We have successfully supported a UK patient registry.
which serves as a central resource for doctors and researchers. This registry is crucial for
documenting each case, facilitating better care, and opening new avenues for research.
Additionally. we have made significant progress in developing a patient friendly Standard of
Care document for both children and adults to ensure consistent and high-quality treatment for
all DBAS patients nationwide.
Our fundraising efforts have been instrumental in supporting our initiatives. We are grateful for
the generosity of our supporters. whose contributions have enabled us to fund vital research
projects and provide essential resources to families.
In the coming year, we will continue to strengthen our research collaborations, both nationally
and internationally. By partnering with leading research institutions and medical professionals,
we aim to accelerate the development of new treatments and move closer to finding optimal
treatment choices for DBAS.
Our focus on community outreach and education will remain a priority. We will work to increase
awareness of DBAS, promote early diagnosis, and advocate for better healthcare policies.
Through workshops, informational sessions, and communtty events, we will continue to build a
strong. informed, and supportive DBAS community.
l am so proud of the progress we have made this year and the resilience of our community. The
achievements of DBAS UK are a testament to the dedication and hard work of our volunteers.
supporters, and partners. As we look to the future. we remain committed to our mission of
providing support. funding research. and fostering a sense of community among those affected
by Diamond Blackfan Anaemia Syndrome.
on￿ again, this charity could not function without the support, dedication, and commitment of
its committee and its wonderful volunteers. Without these people stepping fO￿ard and giving up
their precious time we would not be where we are today.
Thank you for your continued support.
Leisa Batkin
Chair and Trustee DBA UK

DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK
REPORT OF THE TRusfEES
FOR THE YEAR ENDED 31 DECEMBER 2024
The tW5tees present their report with the financial statements of the charity for the year ended 31 December 2024.
The trustees have adopted the provisions of Accountlng and Reporting by Charities: Statement of Recommended
Practi￿ applicable to charities preparing thelr accounts in accordance with the Financial Reporting Stsndard
applicable in the UK and Republic of Ireland (FRS 102) (effettlve l January 2019).
OBJEcfivES AND AcrIvrrIES
Objectives and aims
a) For the relief of Sickness of those suffering eÉther directly or indirettly from Diamond Blackfan Anaemia Syndrome
(DBAS) and associated conditions.
b) To educate the general public through promotion of research and the dissemination of knowledge about Diamond
Blackfan Anaemia Syndrome (DBAS).

DIAMOND BiACKFAN ANAEMIA SUPPORT GROUP UK
REPORT OF THE TRusfEES
FOR THE YEAR ENDED 31 DECEMBER 2024
OBJEcfIvES AND AcfIviTIES
Significant activities
In May we held our annual Family Weekend at PGL Caythorpe Court in Lincolnshire. As always, it wa5 wonderful to
see many of our regular families again, as well as welcoming several new families into our amazing support network.
The weekend provide5 a safe Spa￿ where parents and adults can share experiences and knowledge, listen to a wide
range of professiona15 and consuitants giving amazing presentstions and talks. Ail this happens while the children are
taken away, enjoying themselves on high wires, ziplines climbing walls. This year we had over seventy adults and 60
children attend. The weekend is always the highlight of our calendar. DBSA UK cover all costs for the weekend at no
cost at all to our families.
Annual Adult Patient Conferen
In previous years, each year we held a separate Conferen￿ for our small number of adult DBAS patients at a
different time and location. However, in the past couple of years we have merged this event into our regular Family
Weekend in May. This has proved very popular for l)oth our adults and other parents. As a result, we have decided to
continue with this arrangement as a regular plan.
Support of DBA Research and improved clinical management techniques
Although we are a relatively small charity, we support research projects from all around the world, all trying to
discover and understand the mechanisms for the Occurren￿ of DBA and to improve the management of the
condition.
This year, we have collaborated with the DBAF Foundation in the USA on two projetts relating to research for the
mechanisms, causes and treatment of DBAS.
In January 2024 DBAS UK contributed $15,000 USD (£12,097) towards a Research Project Competition organi5ed
and managed by the DBAF Foundation USA. The competition is open to researchers and scientists from all over the
world, submitting applications for DBAS specific research projects. DBAS UK are proud to support this amazing
initiative.
In March, again DBAS UK were happy to support a joint funding Ventu￿ with DBAF Foundation USA to fund a
researcher for one year under the guidance of Dr Deena 15kander at Imperial College London. DBAF USA contributed
$40,000 USD (£35,160) and we, DBAS UK contributsd £30,000 to provide the requested £65,160 to fund the project.
The Global Bridges DBAS conferen￿ was held in Madrid in May. This is an amazing conference, bringing together
specialists, clinicians, consultants and researchers in DBAS from almost all European countries. Leisa Batkin, our
charity Chair attended and returned filled with hope that so many wonderfully clever people are focussed on finding
the mechanisms, causes and treatments for such are a rare condition a5 DBAS. DBAS UK were happy to contribute
6,000 Euros (£5,280) towards the huge cost of organising and h05ting the weekend conference.
Online support through social media via our website
Our Facebook pages and Instagram reels continue to be an invaluable source of infomation, support and Inspiration
for all our DBAS patients and families. We also have a website which is packed with information relating to DBAS.
This year our website ha5 had a complete makeover. It previously felt and looked a litue outdated.
We reviewed all content and are now happy that iys look and feel is modern and user friendly. Additionally, we
ensured that it is fully fijnctional on mobile devlces like phones and tablets.
Telephone Helpline
DBAS UK contlnue to provide a telephone helpline for DBAS support. However, with the increasing popularity of
soclal media, we receive very few telephone calls. Our focus has therefore switched to online supwrt via our
Facebook pages which have proved hugely suc￿SSfUl.

Information Leaflets
DBAS UK have produced new and much improved infomiation leaflets which we ￿gUlarlY circulate and provide as
download5 via our website. This reflects the changing approache5 to DBAS treatrnent and management.
DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK
REPORT OF THE TRUSTEES
FOR THE YEAR ENDED 31 DECEMBER 2024
ACHIEVEMENT AND PERFORMANCE
We were delighted to be able to organise our Annual Family Weekend at Caythorpe Court PGL ￿ntre in Lincolnshire.
It was wonderful to see our lovely families and children again as well as welcome five new families into our little
community. Everybody had an amazing weekend meeting old friends and new. We had some extremely intsresting
presentations from our consultants and research partners. We saw record numbers of families attending thi5 year
proving that this event is by far the most important event in our calendar.
Throughout the year we also continued wf(h frequent updates via social medla platfoms, literature and webinars.
Our families have felt supported and connected. It was really important that we offered guidance that was up to
date, relevant and easy to understand.
Our committee and trustees have worked tirelessly to support our DBA families and patients. Some of whom have
been through or are going through the Bone Marrow Transplant process with their children. This is a hugely stressful
and emotional journey and we are very fortunate to have families who can help us share their support and BMT
experience5.
FINANCIAL REVIEW
Financial Review
Totsl annual Income for 2024 £70,635
Total Expenditure for 2024 was £86,584
Notsble expenditure thls year included;
Shared Grant with DBAF USA for CollaLK)ration Research Competition £12,097
Shared Grant with DBAF USA for Dr Deena Iskander Research Projett £30,000
Annual DBA UK Family Weekend
£24,069
Global Bridges Event contribution (6,000 Euros)
£ 5,280
Totsl Cash As*ts at 31 December 2024
£127,717
Reserves policy
Our annual Famlly Weekend remalns the core event for our charty. Consequently, the Committee have decided that
the charity should hold "3 years costs for Family Weekends" in reserve. Currently each Family Weekend costs the
charity approximately £25,000 so we must therefore hold £75,000 in reserve.
FUTURE FUNDRAISING OBJEcfIvES AND PLANS
The Committee acknowledge that golng forward the charity will have to work harder to secure a good annual
income. This may involve explorlng other sources of income such as corpordte sponsorships and grants. The
committee discussed the possibility of seeking external advi￿ on putting together a fundraising strategy for the
charity. However, we are aware that putting such a strategy into practice may be challenging given that we rely
heavily on such a STnall group of volunteers. We acknowledge that a great contribution is made by our committee
volunteers and we are grateful for the many hours they have spent sharing their skills, knowledge and experien￿.
Without this valuable contribution, we would not have been able to achieve so much thi5 year. However, Ilke most
charities, we must actlvely make provision to recruit new Committee members to support the few we have currently.

srRucfuRE, GOVERNANCE AND MANAGEMENT
Governing document
The charty is controlled by its governing document, a deed of trust and constitutes an unincorporated charity.
DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK
REPORT OF THE TRusfEES
FOR THE YEAR ENDED 31 DECEMBER 2024
srRUCTURE, GOVERNANCE AND MANAGEMENT
Recruitment and appointment of new trustees
Election from member5 at AGM on 3 Year rotatlon, 113rd resigning in turn each year, who are then eligible for re-
election at our AGM usually held at our Family Weekend usually in May.
Trustees give their time voluntarily and generally receive no remuneration or other benefits. However, as a
temporary emergency measure, Leisa Batkin, our Chair and Trustee re￿iVeS a small sum per month to secure time
for the vitsl work she does for the charity- This will be reviewed as and when new Committee members are recruited
and the wOr￿oad is reduced for the few committee members we currently have.
Committee Roles and Responsibilities
Like many other charities, we struggle to find volunteers who are willing to commit their time and skills to our cause.
Naturallyi this puts even more pressure on our existing volunteers who already work tirelessly to support the charity.
We recognise that this situation is not sustainable so next year it is our primary goal to recruit new volunteers onto
the Committee. We are truly grateful to the current committee members who work tirelessly for the charity.
We continued to fijnd Leisa Batkin, our most medically qualified and experienced committee member (and Chair), on
a 'consultsncy basis, for a set number of hours per week. This ensures that Leisa can dedicate her precious time to
supporting our volunteer committee until such a time that we could recruit more new members. This temporary
arrangement has proved to be a huge SUC￿55 and we are extremely very gratsful to Leisa for her continued
commitment.
Risk management
The trustees have a duty to identify and review the risks to whlch the charity is exposed and to ensure appropriate
controls are in pla￿ to provide reasonable assuran￿ against fraud and error.
REFERENCE AND ADMINIsfRATIVE DETAILS Registered Charity number 1083179
Principal address
31 Roman Place
LEEDS
LS8 2DS
Trustees
From 1st january to 31st De￿rnber (Flnancial Year)
Leisa Batkin.
Peter Redmond.
Ellie Hudson
Joanne Hubbard
Jayson Whittaker
Helen Till
Chair and Trustee
Treasurer and Trustee
Secretary and Trustee (appolnted as Secretary on 21st May 2024)
Fundraising Lead and Trustee
Trustee
Trustee. Resigned as Trust￿ to 20th June 2024

Independent Examiner for 2024
Wasley Chapman LLP
5 Bobbles Bank
Whltby
North Yorkshire
Y021 IEF
Tel. 01947 605921
Contatt: Ross Meadows
PUBLIC BENEFrr
In line with the Charty Commission's guidance on public benefit, the charty committee regularly reviews its objetts
and achievements in order to ensure that the guidelines are complied with.
DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK
REPORT OF THE TRusfEES
FOR THE YEAR ENDED 31 DECEMBER 2024
Approved by order of the board of trustees on 16th Ottober 2025 and signed on its behalf by:
Peter Redmond - Treasurer and Trustee

INDEPENDENT EXAMINER'S REPORT TO THE TRusfEES OF DIAMOND BLACKFAN ANAEMIA SUPPORT
GROUP UK
Independent examIne￿S report to the trustees of Diamond Blackfan Anaemia Support Group UK
I report to the charity trustees on my examlnatlon of the accounts of Diamond Blackfan Anaemia Support Group UK
(the Trust) for the year ended 31 December 2024.
Responsibilities and basis of report
s the charity trustees of the Trust you are responsible for the preparation of the accounts in accordan￿ with the
requirements of the Charities Act 2011 ('the ACV).
I report in respett of my examination of the TrusV5 accounts carried out under Section145 of the Att and in carrying
out my examination I have followed all applicable Direttions 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 connettion wlth
the examination giving me cause to believe that in any material respect:
l. accounting records were not kept in respect of the Trust a5 requi￿ by Scrtion 130 of the Att; or
2. the accounts do not accord with those records; or
3. the accounts do not comply with the applicable requirements concerning the form and content of accounts Set out
in the Charities (Accounts and Reports) Regulations 2008 other than any requirement that the accounts give a tnje
and falr vlew which is not a matter considered as part of an independent examination.
I have no concern5 and have come across no other matters in connettion 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.
Ross Meadows
Wasley Chapman LLP
5 Bobbles Bank
Whitby
North Yorkshl
Y021 IEF
Tel. 01947 605921
16th Ottober 2025

DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK
srATEMENT OF FINANCIAL AcrivrrIES FOR THE YEAR ENDED 31 DECEMBER 2024
31.12.24
Unrestricted
fund
31.12.23
Unrestricted
fund
Notes
INCOME AND ENDOWMEMfs FROM
Donations and legacies
68,415
74,262
Other trading artivities
Investment income
519
1,701
2,906
1,495
Total
70,635
78,663
EXPENDITURE ON
Raising funds
840
830
Other
85,744
70,438
Total
86.584
71,268
NEf INCOME
-15,949
7,395
RECONCILIATION OF FUNDS
Totsl funds brought forward
141826
135,431
TOTAL FUNDS CARRIED FORWARD
126,877
142,826

The notes fom part of these financial statements Page 8
DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK
BALANCE SHEEr
31 DECEMBER 2024
31.12.24
Unrestricted
fund
31.12.23
Unrestricted
fund
Notes
CURRENT ASSETS
Cash at bank
127,717
143.666
CREDrroRS
Amounts falling due within one year
(840)
(830)
NEf CURRENT ASSErs
126,877
142,826
TOTAL ASSEfs LESS CURRENT UABILrrIES
126,877
142,826
NET ASSETS
126,877
142,826
FUNDS
Unrestricted funds
126,877
142,826
TOTAL FUNDS
126,877
142,826
The financial statements were approved by the Board of Trustees and authorised for Issue on 16th October 2025
and were signed on its behalf by:
Peter Redmond - Treasurer and Trustee
Leisa Batkin - Chair and Trustee
Ellie Hudson - Secretary and Trustee

The notes form part of these financial statements
DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK
NOTES TO THE FINANCIAL sfATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024
I. STATUTORY INFORMATION
Diamond Blackfan Anaemia Support Group is an unincorporated charity, reglstered in England & Wale5. The charity's
registered number and prlnclpal address can be found in the Report of the Trustees.
2. ACCOUNTING POLICIES
Basis of preparing the financial statements
The financial statements of the charity, which is a public benefit entity under FRS 102, have been prepared in
accordance with the Charities SORP (FRS 102) 'Accounting and Reporting by Charities: Statement of Recommended
Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard
applicable in the UK and Republic of Ireland (FRS 102) (effective l January 2019),, Financial Reporting Standard 102
The Financial Rewrting Stsndard applicable in the UK and Republic of Ireland, and the Chaiities Att 2011. The
financial statements have been prepared under the historical cost convention.
In p￿ParIng the financial Statements, the tNsiees are required to make an asse55ment of tho ability of the charty to
continue as a going con￿rn. The trustees have considered all available eviden￿ for the charity which covers the 12
month period from the date of signing these financial statements. Against the backdrop of the COVID-19 Pandemic
the trustees have paid particular attention to likely cashflow requirements and the future availability of adequate
ca5hflow to the charity.
On the basis of this consideration, the tW5tee5 are satisfied that the charity has adequate resources to contlnue in
OFerational existen￿ and to meet its liabilities as they fall due for the foreseeable future. In reaching this conclusion
they consider that no matsrial uncertainty exists. As a result, the trustees have concluded that it remains appropriate
to adopt a going con￿rn basis of preparation in these financial statements.
Income
All income is recognised in the Statement of Financial Acilvities On￿ the charity has entitlement to the funds, it is
probable that the income will be re￿iVed and the amount can be measured reliably.
Expenditure
Liabilities are recognised as expendi￿re as 500n as there is a legal or constructive obligation commtiing the charty
to that expenditure, it is probable that a transfer of economic benefits will be required in *ttlement and the amount
of the obligation can be measured reliably. Expenditure is accounted for on an accruals basi5 and has been classified
under headings that aggregate all cost related to the category. Where costs fdnnot be directly attributsd to particular
headings they have been allocated to activities on a basis consigcent with the use of resources.
Taxation
The charity is exempt from tax on Its charitable activities.
Fund accounting
Unrestricted funds can be used in accordance with the charitsble objettives at the discretion of the trustees.
Restricted funds can only be used for particular restricted pU￿oSe5 within the objects of the charty. Restrittions
arlse when specified by the donor or when funds are raised for particular restritted purposes.
Further explanation of the nature and purpose of each fund is included in the notes to the financlal ststements
10

Continued ...
DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK
NOTES TO THE FINANCIAL sfATEMENTS - FOR THE YEAR ENDED 31 DECEMBER 2024
3. OTHER TRADING AcfIvrnES
31.12.24
31.12.23
Fundraising events
519
2,906
4. INVEsfMENT INCOME
31.12.24
31.12.23
Deposit account interest
1.701
1,495
5. INDEPENDENf EXAMINERS, REMUNERATION
31.12.24
31.12.23
Fees payable to the charivs independent examiners for the
independent examination of the charity's finanaal statements
840
830
6. TRusfEES' REMUNERATION AND BENEFrrs
Durlng the year Trustee; L Batkin was remunerated for consultsncy services totslling £3,000 (2023: £3,000). This is
permitted in accordance with a resolution dated 9 luly 2019 updating the Trustee Benefit Clause in the Charity's
Governing Document which was approved by the Charty Commission.
Trustees, expenses
Expenses totalling £366 {2023'. £1,312) were paid to one or more Trustees during the year in relation to expenses.
7. COMPARATIVES FOR THE sfATEMENT OF FINANCIAL AcrivrrIES
Unrestricted
Fund
INCOME AND ENDOWMENTS FROM
Donations and legacies 2023
74,262
Other trading activities 2023
Investment income 2023
2,906
1,495
Total
78,663
Total EXPENDrruRE ON
Ralsing funds 2023
Other 2023
71,268
Total
71,268
NEf INCOME
7.395
RECONCIUATION OF FUNDS
Totsl funds brought forward
135.431
Continued ...
DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK

NOTES TO THE FINANCIAL sfATEMENTS- FOR THE YEAR ENDED 31 DECEMBER 2024
7. COMPARATIVES FOR THE sfATEMENT OF FINANCIAL ACTIvrrIES - continued
Unrestricted
Fund
TOTAL FUNDS CARRIED FORWARD
142,826
. CREDITORS: AMOUNTS FALLING DUE wrrHIN ONE YEAR
31.12.24
31.12.23
Other creditors
840
830
9. MOVEMENT IN FUNDS
Net
movement in
fijnds
At1.1.24
At31.12.24
Unrestricted funds
Genernl fund
142,826
-15,949
126,877
TOTAL FUNDS
142,826
-15,949
126,877
Net movement in funds, included in the above are as follows:
Incoming
Resources
Resources
expended
Movement in
Funds
Unrestricted funds
General fund
70,635
185,744)
-15.949
TOTAL FUNDS
70,635
{85,744)
-15,949
Net
movement in
funds
Comparatives for movement in funds
At 1.1.23
At31.12.23
Unrestricted funds
General fund
135.431
7,395
142.826
TOTAL FUNDS
135.431
7,395
142,826
Continued ...
DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK
12

NOTES TO THE FINANCIAL sfATEMENTS - FOR THE YEAR ENDED 31 DECEMBER 2024
9. MOVEMENT IN FUNDS- continued
Comparative net movement in funds, included in the above are as follows:
Incoming
Resources
Resources
expended
Movement in
Funds
Unrestricted funds
Generdl fund
68,663
{71.268)
7.395
TOTAL FUNDS
78,663
(71,2681
7,395
A current year 12 months and prior year 12 months combined positron is as follows:
Net
movement in
funds
Comparatives for movement in funds
At 1.1.23
At31.12.24
Unrestrirted funds
General fund
142,826
-15,949
126,877
TOTAL FUNDS
142,826
-15.949
126,877
A current year 12 months and prior year 12 months combined net movement in
fund5, included in the above are as follows:
Incoming
Resources
Resources
expended
Movement in
Funds
Unrestrirted funds
General fund
143,072
(128.468)
14,604
TOTAL FUNDS
143,072
1128,4681
14,604
IILRELATED PARTY DISCLOSURES
Transactions with Trustees during the year are summarised in note 6.
13