People with rare diseases cannot be left behind.

But for them, many still children, this is everyday reality.

services and holistic care in rare diseases, by 2030

What is holistic care?

Holistic care encompasses the global spectrum of people’s health, social and everyday needs
with rare diseases and their families. This is particularly important when dealing with rare diseases, where only around 5% of these conditions have dedicated therapy of any kind.

How to get there?

The challenges faced by people living with rare diseases are closely linked to the 2030 Agenda (UN) and its Sustainable Development Goals (SDGs). Human rights, the 2030 Agenda and the SDGs will be our roadmap for achieving holistic care.

Dr. Tedros  Adhanom, Diretor Geral da OMS
<sub>© World Health Organization<sub><br><sub>Christopher Black 2021<sub>

The vision of the Sustainable Development Goals is a world in which no one is left behind, including people who suffer from rare diseases. Just because a disease affects a small number of people does not make it irrelevant or less important than diseases that affect millions.

Dr. Tedros Adhanom Ghebreyesus, Diretor-Geral da OMS, Statement for Rare Disease Day, February 2018.

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Our position

The author’s conviction that the medical and social needs caused by rare diseases (and their adequate assistance) are part of the agenda of human rights and the right to health from a global perspective motivates this proposal.

Thus, equity in health, human rights, and social justice will be the main focus of our proposal under the guidance of the 2030 Agenda.

Pharmaceutical services, although fundamental, are just one aspect of a public health policy worthy of this name.

For this reason, it is necessary to change the focus of the debate so that we can consider the social dimension of rare diseases in public policies related to them!

With Academia de Pacientes 2030, you will never think about health and rare diseases in the same way again!

“leave no one behind”

On December 16, 2021, the United Nations General Assembly (UNGA) adopted a resolution that recognizes the challenges faced by people living with rare diseases, as well as their families, and that guides its 193 Member States to adopt measures that promote equity in health in dealing with this wholly neglected population.

The main inspiration of the resolution is human rights treaties and the 2030 Agenda, approved by the UNGA in 2015.

The 2030 Agenda proposes 17 Sustainable Development Goals, which bring together 169 other marks. The SDGs are part of UNGA Resolution 70/1: “Transforming our world: the 2030 Agenda for Sustainable Development”, later renamed the 2030 Agenda.  The SDGs are broad and interdependent, but each has a separate list of goals to achieve. Achieving all 169 targets would indicate the completion of all 17 SDGs.

The SDGs cover social and economic development issues, including poverty, hunger, health, education, global warming, gender equality, water, sanitation, energy, urbanization, environment, and social justice.

Seven of these SDGs are especially important for people living with rare diseases.

Addressing the needs of people with rare diseases is critical to accomplish the UN’s 2030 Agenda, the SDGs, and its pledge to leave no one behind.

Academia de Pacientes 2030 is an initiative that aims to strengthen the debate on rare diseases, inscribing them more vigorously within the framework of the Public Health approach (and its mandate to promote social justice) based on the relentless pursuit of equity in health for this population, inspired by the constant, persistent and vigilant affirmation of human rights.

It is also an ongoing non-formal education experience aimed at people living with rare diseases, their families, health professionals, managers, politicians, and the public in general.

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