UN resolution on people with rare diseases Session 1 Oct 27 2023 PDF.pdf

Session 1
October 27, 2023,
8:30 – 10:30 am. UN
resolution on people
with rare diseases
Fernando Ferrer
Auditorium of the National Museum of the
Republic
Brasília, D.F., Brazil. October 26 – 28, 2023
Fernando Ferrer MBA 1

Sessão 1
Outubro 27, 2023
8:30 – 10:30 am
Resolução da ONU
sobre pessoas com
doenças raras
Fernando Ferrer
Auditório do Museu Nacional da Republica
Brasília, D.F., Brasil. Outubro 26 – 28, 2023

This is to introduce data related
to the UN resolution on people
with rare diseases. It is for
informational purposes only
and is a non-sale publication.
Isto é para apresentar dados
relacionados com a resolução da
ONU sobre pessoas com doenças
raras. É apenas para fins
informativos e é uma publicação
não comercial.

UN resolution on people
with rare diseases
Resolução da ONU sobre pessoas
com doenças raras
CONFERENCE SPEAKERS/DEBATEDORES
Antoine Daher. Casa Hunter, Febraras. Brazil
Dr. Vlasta Zmazek. DEBRA* Croatia (on-line)
MODERATORS/MODERADORES
Leandro Rossi. DEBRA* Brazil (on-line)
Fernando Ferrer. Amaviraras, USA
*Epidermolysis bullosa (EB) Fernando Ferrer MBA 4
United
Nations

Welcome message
by Dr Durhane
Wong-Rieger
Fernando
Ferrer
MBA
5

Formal Side Event UN HLM UHC
Durhane Wong-Rieger, Ph.D.,
Yann Le Cam
https://cdnapisec.kaltura.com/p/2503
451/embedPlaykitJs/uiconf_id/497546
63?iframeembed=true&entry_id=1_d
ogcelvo
RDI CALLS ON UN MEMBER STATES TO
MAKE UNIVERSAL HEALTH COVERAGE A
REALITY FOR PLWRD (PERSONS LIVING
WITH A RARE DISEASE)
21 SEPTEMBER 2023
13:15 – 14:30 HS EST/US
United Nations Headquarters
405 E 45th St, New York, NY 10017. USA
Conference room 7
https://media.un.org/en/asset/k1l/k1lwbt2rwz

https://cdnapisec.kaltura.com/p/2503451/embedPlaykitJs/uiconf_id/49754663?iframeembed=true&entry_id=1_dogcelvo
100 people participated in person at RDI’s hybrid event “A
Blueprint for Leaving No One Behind”
100 pessoas participaram pessoalmente do evento híbrido
da RDI “A Blueprint for Leaving No One Behind”
Access to Speakers:
https://www.rarediseasesinternational.org/f
ormal-side-event-to-the-high-level-meeting-
on-universal-health-coverage-uhc-2023/

https://www.instagram.com/re
el/Cxdr7tSN-
C6/?igshid=MzRlODBiNWFlZA==
Opening message from
Her Majesty The Queen
Letizia of Spain
Sua Majestade a Rainha
Letizia da Espanha

Min. 33:08 – 37:28
https://cdnapisec.kaltura.com/p/2503451/em
bedPlaykitJs/uiconf_id/49754663?iframeemb
ed=true&entry_id=1_dogcelvo
Her Excellency Dr Theresa Tam
Chief Public Health Officer, Canada

His Excellency Dr Carlos Augusto Grabois Gadelha
Secretary of Science, Technology, Innovation and
Strategic Health Inputs, Ministry of Health, Brazil
Min. 41:13 – 44:45

World Bank commitment to
rare diseases
Compromisso do Banco
Mundial com as doenças raras
Min. 51:20 - 54:45
https://datatopics.worldbank.org/world-development-indicators/stories/universal-health-coverage-as-a-sustainable-development-goal.html
Dr Sarah Alkenbrack
Senior Health Economist, Health Nutrition and
Population Global Practice, World Bank Group

Dr Sarah Alkenbrack WHO Transcription the message in video

Dra. Vlasta Zmazek
President, DEBRA Croatia

Statement. Rare Diseases International and Partners

https://www.uhc2030.org/news-and-events/news/the-2023-un-hlm-on-uhc-was-a-moment-to-renew-commitment-to-uhc-and-set-the-path-for-action-and-investment/
This webpage presents key
data from 2023 debates and
past meetings over the years.
https://csemonline.net/wp-content/uploads/2023/09/Civil-Society-Commentary-on-GMR_MCASBWN-9-15-_MC.pdf

….
• On Monday (Sept 18, 2023), WHO and the World Bank
launched our report card on universal health coverage.
• The findings are alarming. 4.5 billion people – more than
half of the world’s population – are not fully covered by
essential health services.
• And 2 billion people face financial hardship or are
impoverished due to out-of-pocket health spending.
• That puts families in the impossible situation of choosing
between paying for health care, putting food on the table,
or sending their kids to school.
• These gaps put lives at risk, and prevent us from
addressing many of the most pressing challenges in global
health.
• Every day, almost 800 women die from preventable
complications of pregnancy and childbirth.
• Every day, 14,000 children under five die, mostly from
preventable and treatable causes.
• And every day, more than 100,000 people die
prematurely from noncommunicable diseases.
• This is not a technical problem, it’s a political problem.
Fernando Ferrer MBA
19
https://www.who.int/director-general/speeches/detail/who-director-general-s-
opening-remarks-at-the-un-general-assembly-high-level-meeting-on-universal-
health-coverage-21-september-2023
Dr Tedros Adhanom
Min. 13:44 – 21:14
English

….
• Na segunda-feira (18 de setembro de 2023), a OMS e o Banco
Mundial lançaram nosso boletim sobre cobertura universal de
saúde.
• As descobertas são alarmantes. 4,5 mil milhões de pessoas –
mais de metade da população mundial – não estão totalmente
cobertas por serviços de saúde essenciais.
• E 2 mil milhões de pessoas enfrentam dificuldades financeiras
ou estão empobrecidas devido a despesas de saúde do próprio
bolso.
• Isso coloca as famílias na situação impossível de escolher entre
pagar pelos cuidados de saúde, colocar comida na mesa ou mandar
os filhos para a escola.
• Estas lacunas colocam vidas em risco e impedem-nos de
enfrentar muitos dos desafios mais prementes da saúde global.
• Todos os dias, quase 800 mulheres morrem devido a
complicações evitáveis da gravidez e do parto.
• Todos os dias, 14 mil crianças com menos de cinco anos morrem,
a maioria por causas evitáveis e tratáveis.
• E todos os dias, mais de 100 mil pessoas morrem
prematuramente de doenças não transmissíveis.
• Este não é um problema técnico, é um problema político.
• Min
Fernando Ferrer MBA
20
https://media.un.org/en/asset/k1p/k1po296dci
Dr Tedros Adhanom
Min. 13:44 – 21:14
Português

Axel van Trotsenburg
World Bank's Senior Managing Director (SMD),
responsible for Development Policy and Partnerships.
Min. 21:15 – 27:25
https://media.un.org/en/asset/k1p/k1po296dci

Mrs. Mette Fredericksen Prime Minister Denmark
United Nations High-level meeting on universal
health coverage (UN HLM UHC 2030 )– 21 September
2023

RDI FOUNDER YANN LE CAM DELIVERS A FORMAL
STATEMENT AT THE UN HIGH-LEVEL MEETING ON
UNIVERSAL HEALTH COVERAGE. 21 SEPTEMBER 2023
https://www.rarediseasesinternational.org/rdi-the-un-a-blueprint-for-leaving-no-one-behind-2/

United Nations –
Universal Health Care
SDGs 2030 – SDG 3
The 2023 UN HLM (United Nations High Level Meeting) on UHC
(Universal HealthCare) was a moment to renew commitment to UHC
and set the path for action and investment.
New York City - 21 September 2023
24
Source: https://www.uhc2030.org/news-and-events/news/the-2023-un-hlm-on-uhc-was-a-moment-to-renew-commitment-to-uhc-and-
set-the-path-for-action-and-investment/ Fernando Ferrer MBA

Political Declaration of the High-level Meeting on
Universal Health Coverage
“Universal Health coverage: expanding our ambition for health and well-
being in a post-COVID world”
on 21 September 2023 Member States unanimously recognized that universal
health coverage (UHC), those related to health and well-being (SDG 3), is
fundamental to achieving all of the Sustainable Development Goals (SDGs)
This is the access to the political declaration:
https://www.un.org/pga/77/wp-content/uploads/sites/105/2023/09/UHC-Final-
Text.pdf
Rare diseases are are included in the in Article 55, paragraph c)

55. Strengthen efforts to address the specific physical and
mental health needs of all people as part of universal health
coverage, building on commitments made in 2019, by advancing
comprehensive approaches and integrated service delivery and
striving to ensure that challenges are addressed and the
achievements are sustained and expanded, including for:
• HIV/AIDS, sexually transmitted infections, tuberculosis, malaria,
polio, hepatitis, neglected tropical diseases including dengue,
cholera, and other emerging and re-emerging infectious diseases;
• non-communicable diseases, including cardiovascular diseases,
cancer, chronic respiratory diseases, diabetes, mental health
conditions and psychosocial disabilities, and neurological
conditions, including dementia;
• eye health conditions, hearing loss, musculoskeletal conditions, oral
health, and rare diseases;
• injuries and deaths, including those related to road traffic accidents
and drowning, through preventive measures and strengthening an
integrated emergency, critical and operative care system;
Political Declaration
of the High-level
Meeting on
Universal Health
Coverage
September 2023
“Universal Health
coverage: expanding
our ambition for
health and well-
being
in a post-COVID
world”

The United Nations
1945 - Today

The Charter of the United
Nations was signed in San
Francisco, USA, on June
26, 1945, after the end of
the United Nations
Conference on
International Organization.
With 51 member countries
it came into force on
October 24, 1945.
Fernando Ferrer MBA
28
https://www.un.org/en/about-us/growth-in-un-membership
Source: of image: UNITED NATIONS - PREAMBLE TO THE CHARTER OF THE UNITED NATIONS - NARA - 515901.jpg

A Carta das Nações Unidas
foi assinada em São
Francisco, EEUU, a 26 de
junho de 1945, após o
término da Conferência
das Nações Unidas sobre
Organização Internacional.
Com 51 países membros
entrou em vigor no 24 de
outubro 1945.
Fernando Ferrer MBA
29
Source: of image: UNITED NATIONS - PREAMBLE TO THE CHARTER OF THE UNITED NATIONS - NARA - 515901.jpg

United Nations
There are currently
193 UN Member
States.
Each of the Member
States of the United
Nations has one seat in
the General Assembly.
Source: https://dam.media.un.org/CS.aspx?VP3=DamView&VBID=2AM94SCI76T | Credit: UN Photo/Loey Felipe

Map
showing
the
current
membership

SDG3: Target 3.8: Achieve universal health
coverage, including financial risk protection,
access to quality essential health-care services and
access to safe, effective, quality and affordable
essential medicines and vaccines for all.
https://www.un.org/sustainabledevelopment/health/
https://unece.org/fileadmin/DAM/pau/icpd/UNFPA-UNECE_meeting_2016/8_3.8_Indicator_SDG_workshop_Nov-2016.pdf
Sustainable Development Goal 3 of the 2030 Agenda for Sustainable Development
is to “ensure healthy lives and promoting well-being for all at all ages”.
https://sdgs.un.org/topics/health-and-population

Fernando Ferrer MBA34
https://www.who.int/data/gho/data/themes/theme-details/GHO/universal-health-coverage
….Universal health coverage has therefore
become a major goal for health reform in many
countries and a priority objective of WHO

https://www.un.org/about-us/member-states
1
How to find information of representatives and member states on the United Nations
2 https://bluebook.unmeetings.org/
Clicking here will get you to è
3 Once selected the file to display. You
must select the Member State
Source: Website of the United Nations
https://ask.un.org/faq/14345#:~:text=There%20are%20currently%20193%20UN%20Member%20States.

The UN Blue Book
(https://bluebook.unmeetings.org/ )
contains information on the names and
contact information of the
representatives of Member States.
Example of Brazil
https://www.un.org/about-us/member-states

In the past, commitments have
been made that were not fulfilled
We learn from our mistakes and in the present we built a new and better future

International Conference on Primary Health
Care, Alma-Ata, USSR, 6-12. September 1978
The first International Conference
on Primary Health Care in Alma-
Ata, Kazakhstan, an event of
major historical significance.
Convened by the World Health
Organization (WHO) and the
United Nations Children's
Fund (UNICEF), Alma-Ata drew
representatives from 134
countries, 67 international
organizations and many
nongovernmental
organizations.
https://cdn.who.int/media/docs/default-source/documents/almaata-declaration-en.pdf?sfvrsn=7b3c2167_2
https://www3.paho.org/english/dd/pin/Number17_article1_4.htm#:~:text=Convened%20by%20the%20World%20Health,organizations%
20and%20many%20nongovernmental%20organizations.

https://www.who.int/docs/default-source/documents/almaata-declaration-en.pdf
…urgent and effective national and
international action to develop and
implement primary health care
throughout the world…
Declaration of Alma-Ata
International Conference on Primary Health Care, Alma-Ata, USSR, 6-12
September 1978

Universal Declaration on the
Eradication of Hunger and
Malnutrition
ADOPTED
16 November 1974
BY
the World Food Conference convened
under General Assembly resolution 3180
(XXVIII) of 17 December 1973; and
endorsed by General Assembly resolution
3348 (XXIX) of 17 December 1974

1974: Declaração universal sobre a
erradicação da fome e da desnutrição
https://www.ohchr.org/en/instruments-mechanisms/instruments/universal-declaration-eradication-hunger-and-malnutrition

1. Todo homem, mulher e criança tem o direito inalienável de
estar livre da fome e da desnutrição, a fim de desenvolver e
manter plenamente as suas faculdades físicas e mentais....
https://www.ohchr.org/en/instruments-mechanisms/instruments/universal-declaration-eradication-hunger-and-malnutrition
O tempo é curto. Uma ação urgente e sustentada é vital. A
Conferência, portanto, apela a todas as pessoas que expressam
a sua vontade como indivíduos, e através dos seus governos e
organizações não-governamentais, para trabalharem em
conjunto para pôr fim ao antigo flagelo da fome.
ADOPTADO 16 de novembro de 1974
Time is short. Urgent and sustained action is vital. The
Conference, therefore, calls upon all peoples expressing
their will as individuals, and through their Governments,
and non-governmental organizations, to work together to
bring about the end of the age-old scourge of hunger.
1. Every man, woman and child has the
inalienable right to be free from hunger and
malnutrition in order to develop fully and
maintain their physical and mental faculties…
ADOPTED on 16 November 1974

..entre 691 e 783 milhões de pessoas enfrentaram a
fome em 2022, com uma média de 735 milhões,
representando um aumento de 122 milhões de
pessoas em comparação com 2019. Também constitui
um aviso sombrio, potencialmente comprometendo o
Objetivo de Desenvolvimento Sustentável de
acabando com a fome.
A fome atinge uma em cada dez pessoas
no mundo, segundo relatório da ONU
Jul 12,2023
between 691 and 783 million people faced hunger in
2022, with a mid-range of 735 million, representing an increase
of 122 million people compared to 2019. It also adds up to a
grim warning, potentially jeopardizing the Sustainable
Development Goal of ending hunger.

The United Nations' renewed commitment to achieving universal
mental and physical health access and coverage relies on the
support and influence of various intergovernmental entities, health
professionals, civil society organizations (CSOs), and patient
advocacy groups such as Rare Disease International, AMAVIRARAS
and FEBRARARAS.
This collective commitment represents a fresh and significant
opportunity, one that demands our utmost dedication and
collaboration to bring about this paramount goal for each and
everyone.

O compromisso renovado das Nações Unidas para alcançar o
acesso e a cobertura universais da saúde mental e física conta
com o apoio e a influência de várias entidades
intergovernamentais, profissionais de saúde, organizações da
sociedade civil (OSC) e grupos de defesa dos pacientes, como a
Rare Disease International, AMAVIRARAS e FEBRARARAS.
Este compromisso coletivo representa uma oportunidade nova
e significativa, que exige nossa máxima dedicação e
colaboração para alcançar este objetivo supremo para todos e
cada um.

Thank you !
Muito obrigado !
Fernando Ferrer MBA
Basking Ridge, NJ 07920-9998. USA
Multinational Partnerships LLC
+1 908 219 9291
fferrer@multinationalpartnerships.com
Our Health Advocacy. A NJ Nonprofit Corporation
+1 908 424 9744
info@ourhealthadvocacy.org
Hornillos del Camino, Burgos, Spain
Monday ,June 13, 2022. 7:08 am

References
Weblinks to most relevant sources of information used in the
research.
RDI Founder Yann Le Cam delivers a formal statement at the UN High-Level Meeting on Universal
Health Coverage
https://www.rarediseasesinternational.org/rdi-founder-yann-le-cam-delivers-a-formal-statement-
at-the-un-high-level-meeting-on-universal-health-coverage/
RDI calls on UN member states to make Universal Health Coverage a reality for PLWRD
https://www.rarediseasesinternational.org/rdi-the-un-a-blueprint-for-leaving-no-one-behind-2/
Watch the full video of our formal side-event to the UN High-Level Meeting on UHC on UN Web TV
https://www.rarediseasesinternational.org/watch-our-event-on-un-web-tv/
RDI @ the United Nations Headquarters: A Blueprint for leaving No One Behind in Universal Health
Coverage
https://www.rarediseasesinternational.org/watch-our-event-on-un-web-tv/

References
research (2)
SPEAKERS
https://www.rarediseasesinternational.org/formal-side-event-to-the-high-level-meeting-on-
universal-health-coverage-uhc-2023/
RDI COUNCIL
https://www.rarediseasesinternational.org/rdi-council-governance/
UN high-level meeting, you can find all kinds of useful reference in the summary on the UHC 2020:
https://www.uhc2030.org/news-and-events/news/the-2023-un-hlm-on-uhc-was-a-moment-to-
renew-commitment-to-uhc-and-set-the-path-for-action-and-investment/
Statements from Member States and non-state actors: Plenary
https://journal.un.org/en/new-york/meeting/officials/35afef98-6427-4f2f-8b31-
08db92a6568d/2023-09-21/statements
DEBRA Hrvatska
https://www.debra.hr/

References
research (3)
Statements from Member States and non-state actors: Panel 1
https://journal.un.org/en/new-york/meeting/officials/f57bd460-2f7f-4598-8b33-
08db92a6568d/2023-09-21/statements
Statements from Member States and non-state actors: Panel 2
https://journal.un.org/en/new-york/meeting/officials/918ec263-1190-4f0d-3aa7-
08db984a34c2/2023-09-21/statements
Growth in United Nations membership 1945 - Present
https://dam.media.un.org/CS.aspx?VP3=DamView&VBID=2AM94SCI76T
DAG Library
https://ask.un.org/faq/14345#:~:text=There%20are%20currently%20193%20UN%20Member%20St
ates.

References
research (4)
Universal Declaration on the Eradication of Hunger and Malnutrition | ADOPTED 16 November 1974
https://www.ohchr.org/en/instruments-mechanisms/instruments/universal-declaration-
eradication-hunger-and-malnutrition
Hunger afflicts one in ten globally, UN report finds
https://news.un.org/en/story/2023/07/1138612
Measuring hunger and malnutrition
https://www.fao.org/3/Y4249E/y4249e0d.htm
Historicising global nutrition: critical reflections on contested pasts and reimagined futures
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8593273/
Rome Declaration on World Food Security
https://www.fao.org/3/w3613e/w3613e00.htm

References
research (5)
Health for all beyond 2000: the demise of the Alma-Ata Declaration and primary health care in
developing countries
https://pubmed.ncbi.nlm.nih.gov/12492384/#:~:text=PHC%20did%20not%20achieve%20its,implem
ent%20their%20own%20healthcare%20services.
Declaration of Alma-Ata. International Conference on Primary Health Care, Alma-Ata, USSR, 6-12 |
September 1978
https://cdn.who.int/media/docs/default-source/documents/almaata-declaration-
en.pdf?sfvrsn=7b3c2167_2
Goals 3. Ensure healthy lives and promote well-being for all at all ages
https://sdgs.un.org/goals/goal3
SDG 3
https://sdgs.un.org/topics/health-and-population
International Classification of Diseases 11th Revision
https://icd.who.int/en Fernando Ferrer MBA 51

References
research (6)
WHO – UN General Assembly High-Level Meetings on health 2023 |20 – 22 September 2023 New
York, United States of America
https://www.who.int/news-room/events/detail/2023/09/20/default-calendar/un-general-assembly-
high-level-meetings-on-health-
2023#:~:text=21%20September%202023%20%7C%20Universal%20health,toward%20achieving%20
health%20for%20all.
SDG 3: Target 3.8: Indicator 3.8.1. Definitions, Metadata, Trends, Work
Plan, and Challenges
https://unece.org/fileadmin/DAM/pau/icpd/UNFPA-
UNECE_meeting_2016/8_3.8_Indicator_SDG_workshop_Nov-2016.pdf
Universal Health Coverage as a Sustainable Development Goal
https://datatopics.worldbank.org/world-development-indicators/stories/universal-health-coverage-
as-a-sustainable-development-goal.html
Our mission is accelerate sustainable progress towards universal health coverage (UHC)
https://www.uhc2030.org/about-us/about-us/

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