ANNUAL REPORT
2022
Gdansk | 10th of February, 2023

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Table of contents:
I. Legal framework ............................................................................................................. 3
II. Activity Report............................................................................................................... 4
A. Goal 1............................................................................................................................ 4
B. Goal 2............................................................................................................................ 5
C. Goal 3............................................................................................................................ 6
III. Financial Overview .................................................................................................... 7
A. Profit & Loss Statement ...................................................................................... 7
B. Balance sheet ........................................................................................................... 8
C. Structure of funding ............................................................................................. 9
I V . S u m m ar y ...................................................................................................................... 10

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I. Legal framework
Name of the
Foundation
Borys the Hero Foundation (Foundation BB | FBB)
Legal basis
Notarial deed under Rep. No. A 1738/2019, drawn up on April 16, 2019
National Court Register on July 12, 2019 under NCR No.: 0000794551
Management Tomasz Grybek – CEO, Founder
Supervisory
Board
1. Anna Kluczek-Kollar, President of the Supervisory Board.
2. Maciej Horeczy, Member of the Supervisory Board.
3. Dominik Ziętkowski, Member of the Supervisory Board.
Advisory
Board
1. prof. Maria Mazurkiewicz-Bełdzińska.
2. prof. Jolanta Wierzba.
3. prof. Krzysztof Kałwak.
Foundation
Goals
1. Development of social activity in the field of activities for people and
families affected by rare diseases, with particular emphasis on
leukodystrophy.
2. Building a conscious and inclusive society, as well as social
awareness, in particular on the challenges and needs of people and
families affected by rare diseases, as well raising awareness about
available and experimental methods of diagnosis, treatment,
rehabilitation, education and professional activity of people and
families affected by rare diseases.
3. Supporting solutions and systemic activity devoted to rare diseases
as well as issues of disability and people with disabilities, as well
as issues related to social inclusion, counteracting discrimination
and preventing unequal treatment.
Affiliations &
Memberships
1. Alternate Member/Member (since 29/11/2022) of European
Medicine Agency Paediatric Committee (EMA PDCO).
2. EURORDIS – Affiliated Member, TAG Member.
3. ERN ITHACA – ePAG at Patient Council.
4. MetabERN - Patient Council Member.

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II. Activity Report
Period Report covers period from January 2022 till December 2022. Activities are defined
under Foundation’s goals.
A. Goal 1
Foundation goal
Development of social activity in the field of activities for people and
families affected by rare diseases, with particular emphasis on
leukodystrophy.
Main activities
1. Presentations made during:
• Rare Disease Day at Faculty of Biology of Warsaw University,
Warsaw, 25th of February 2022.
• Workshop "Assemblages of Rare Diseases”, Polish Academy of
Science, Warsaw, 10th of March 2022.
• Annual Conference of Rare Disease Centre of Gdańsk, Medical
University of Gdansk and University of Gdansk, 17th of May 2022.
• Regional conference on rare diseases. Clinical trials of therapies
for rare diseases: the therapeutic pathway from trial to patient.
25th Oct 2022, Novi Sad, Serbia
2. Member of Transdiagnostic Guidelines WP4 ITHACA.
3. Participation in ePAG Workshop and Board Meeting of ERN
ITHACA, 8-10th Dec 2022, Budapest.
4. Co-authorship of scientific article titled “Parents of a child with a
rare disease as stakeholders of his education process”.
5. Co-operation with MLD community in PL in terms of support and
guidance for newly diagnosed children.
Management
summary
Activities showed various fields of cooperation of the Foundation, both
on national (regional) level, as well European. Continuation of
involvement in ERN ITHACA resulted in development of involvement in
joint projects (transdiagnostic guidelines) allowing for deepening the
cross border cooperation between HCP and PO. Moreover, individual
presentations done during formal meetings/events resulted in
strengthening relationships with HCPs and expertise centres.

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B. Goal 2
Foundation goal
Building a conscious and inclusive society, as well as social awareness,
in particular on the challenges and needs of people and families affected
by rare diseases, as well raising awareness about available and
experimental methods of diagnosis, treatment, rehabilitation, education
and professional activity of people and families affected by rare
diseases.
Main activities
1. Active involvement in activities of EMA Paediatric Committee
2. Participation in the EMA;’s drafting group of Complex clinical trials
“Questions and Answers” document.
3. Organizer of:
a. 7th Annual popular-science conference 7.UBB 2022 on rare
diseases and disabilities.
b. RDD 2022 event: 3rd Jazz4Rare concert
4. 2nd RDD in Poland – co-organization of building illuminations
“chain of lights” in Gdańsk, Gdynia, Pruszcz Gd., Katowice,
Szczecin, Warszawa, Wrocław.
5. Involvement in drafting Regional Development Strategy
Programmes 2030 in areas of social inclusion and awareness
activities.
Management
summary
Report period was the time of continuation of well-known and
established initiatives like 7th popular-science conference or 3rd annual
jazz concerts dedicated to rare diseases. Moreover, new initiatives like
the RDD “chain of lights” have been more well established.
Additionally, new cooperation’s areas with EMA were established as well
as follow-up cooperation with Regional and Local Authorities.

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C. Goal 3
Foundation goal
Supporting solutions and systemic activity devoted to rare diseases as
well as issues of disability and people with disabilities, as well as issues
related to social inclusion, counteracting discrimination and preventing
unequal treatment.
Main activities
1. Co-authorship of educational experiment dedicated to rare
disease child based on home-schooling, AAC model and
inclusion activities
2. Lectures for students of Medical University in Gdansk about
rare disease patients’ perspective.
3. Involvement in MetabERN’s NBS Working Group.
4. Participation in MetabERN NBS Workshop, 28-29 Nov 2022,
Frankfurt
5. Implementation of Metropolis Standard for People with
Disabilities (Foundation was awarded for this project with
Paweł Adamowicz’s SMART Metropolis Award)
6. Involvement in several smaller and bigger initiatives dedicated
to deeper inclusion of people with disabilities in social/cultural
life.
Management
summary
Continuous involvement in pedagogical experiment brought added
value in terms of new experience and knowledge to all stakeholders
involved in the process (school, RD family, University) which allowed the
publication of a scientific article with interim analysis. Moreover, efforts
undertaken by the Foundation with drafting Metropolis Standard for
People with Disabilities were recognized with Paweł Adamowicz’s
Award. Additionally, smaller activities were focused on smaller scale
initiatives, characterized by innovative and/or pilot type projects with
possible important future impact on the RD local community. Moreover,
actions taken break down existing barriers and/or wrong patterns,
enabling more equal and inclusive existence of RD individuals/families
within society.

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III. Financial Overview
DISCLAIMER:
Stated below financial information are for reference only and are not reflecting the financial
information under legal & tax polish law obligations1.
A. Profit & Loss Statement
1 EUR = 4,75 PLN
1 Official Financial Report for 2022 will be elaborated and approved according to Polish law in the Q3 2023
2020 2021
A INCOME 631,58
€ 1 473,68
€
I Income on unpaid statutory activities -
€ -
€
II Income on paid statutory activities 631,58
€ 1 473,68
€
III Other incomes -
€ -
€
B COSTS 631,58
€ 1 357,25
€
I Costs on unpaid statutory activities -
€ -
€
II Costs on paid statutory activities 631,58
€ -
€
III Other costs -
€ 1 357,25
€
C PROFIT (LOSS) ON ACTIVITY -
€ 116,43
€
G COSTS OF GENERAL GOVERNANCE -
€ 75,52
€
M NET PROFIT (LOSS) -
€ 40,92
€
PROFIT & LOSS STATEMENT

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B. Balance sheet
1 EUR = 4,75 PLN
Type 2020 2021
Assets 252,90
€ 188,56
€
A. Fixed assets -
€ -
€
I. Intangible assets -
€ -
€
II. Tangible fixed assets -
€ -
€
III. Long-term receivables -
€ -
€
IV. Long term investments -
€ -
€
V. Long-term accruals -
€ -
€
B. Current assets 252,90
€ 188,56
€
I. Stocks -
€ -
€
II. Short-term receivables -
€ -
€
III. Short-term investments 252,90
€ 188,56
€
Liabilities 252,90
€ 188,56
€
A. Equity 147,64
€ 188,56
€
I. Statutory fund 210,53
€ 210,53
€
II. Other funds -
€ -
€
III. Profit (loss) from previous years 62,89
-€ 62,89
-€
IV. Net profit (loss) -
€ 40,92
€
B. Liabilities and provisions for
liabilities
105,26
€ -
€
I. Provisions for liabilities -
€ -
€
II. Long-term liabilities -
€ -
€
III. Current liabilities -
€ -
€
IV. Accruals 105,26
€ -
€
Balance 0 0

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C. Structure of funding
Funding of the Foundation is based mainly on Founders assets and voluntary work of
Foundation Volunteers as well as voluntary/barter cooperation with public entities.
In 2021 and 2022 Foundation acquired public funds for 2nd and 3rd Jazz4Rare concert for Rare
Disease Day 2021 and 2022.
1 EUR = 4,75 PLN
Value
Share in
funding
Value
Share in
funding
Owner Equity -
€ 0% -
€ 0%
Public Funds
(City Hall of Gdynia)
736,84
€ 0% 1 473,68
€ 100%
Other -
€ 0% -
€ 0%
Total 736,84
€ 0% 1 473,68
€ 100%
2020 2021
Funds

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IV. Summary
Activity of the Foundation should be evaluated as a positive development in new
areas (i.a. EMA Task Forces or Drafting Groups, ERNs Working Groups) and
initiatives (RDD Chain of Lights) as well as strengthening existing fields of activity
(i.a. EMA PDCO, EURORDIS TAG, popular science conference, Jazz4Rare)
and cooperation (regional & local authorities, RD Centre in Gdańsk). Involvement
in working groups in ERN ITHACA and MetabERN has led to synergistic development
benefiting both ERN itself and cooperation of the Foundation with HCPs and other
POs networked within ERNs.
Involvement and dedication in the work in the regulatory framework of the EMA PDCO
was recognized by the European Commission (EC) and due to the need of replacing
a vacant position, representant of the Foundation was appointed on 29th
November
2022 by EC Decision as a member (before was an Alternate) of the Paediatric
Committee for the remaining period of the term finishing on 31 July 2023.
Parallelly, Foundation’s engagement in strengthening the social inclusion of people
with disabilities was also recognised by regional authorities through granting
Paweł Adamowicz’s Award for Metropolis Standard for People with Disabilities.
The outlook for the next year is positive with small risk of vulnerability due to
unforeseen threats of ongoing war in Ukraine and related socio-economic
consequences. Competence-based approach will be continued aimed
both in strengthening existing networks with stakeholders as well as building up new
ones.