“WE THE PEOPLES OF THE UNITED NATIONS, determined to reaffirm faith in fundamental human rights, in the dignity and worth of the human person, in the equal rights of men and women and of nations large and small, have resolved to combine our efforts.”
Preamble to the Charter of The United Nations, 1945
For more than seven decades now, the United Nations has been working hard to advance the human condition and to deliver on their promise to “equal dignity for all human beings”.
The central aim of the United Nations is to combine efforts to reaffirm:
- Fundamental human rights
- Dignity & worth of the human person
- Equal rights of men and women
- Equal rights of large and small nations
The realisation that a multi-stakeholder and partnership-based response was needed to achieve this led the UN General Assembly to adopt in November 2015 its 2030 Agenda for Sustainable Development, which included the adoption of a set of 17 measurable Sustainable Development Goals (SDGs).
There is a clear alignment between a number of these goals and the fight to tackle rare diseases and their consequences on the lives of the affected individuals and families. The NGO Committee for Rare Diseases shall be the platform that makes that synergy visible and enables all stakeholders to work together and combine their efforts towards a shared objective. Read more here.
The goals of the NGO Committee for Rare Diseases are fully aligned with many of the 17 Sustainable Development Goals (SDGs), and support the UN’s vision to create a world where every single human can lead a dignified life.
Goal 1: End Poverty in all its forms everywhere
Poverty is generally associated with a lack of health, education, food, knowledge and many other things that make the difference between living and merely surviving. People living with a rare disease are confronted daily and often since birth with obstacles such as exclusion from health care and education systems. This leads to lower employment rates and traps them in a vicious cycle of vulnerability and poverty.
By supporting people living with a rare disease, we are helping the most vulnerable of the vulnerable, and thus moving one step closer to eradicating poverty in all its forms.
Goal 3: Ensure healthy lives and promote well-being for all at all ages
The United Nations has emphasized the need to:
- end preventable deaths of new-borns and children under five
- end avoidable mortality caused by non-communicable diseases
- achieve universal health coverage
- support the research and development of medicines
The burden of rare disease is considerable, with around 350 million affected individuals worldwide. This is in the same range as main and more ‘visible’ non-communicable diseases such as diabetes.
By fighting for the right to appropriate diagnosis and treatment of patients living with a rare disease, we are not only helping the current generation, but also future ones, as the vast majority of rare diseases are genetic and thus preventable, if resources are invested in a suitable manner.
Goal 4: Ensure inclusive and equitable quality education and promote lifelong learning opportunities for all
A quality life starts with a quality education. The United Nations have made strides in the field of education in the last few decades, bringing the rate of out-of-school children down by more than 50% in 15 years. However, a lot more needs to be done, in particular in regards to inclusion by eliminating gender disparities and adapting facilities for people with disabilities.
50% of rare diseases affect children. These children face difficulties in attending school due to the frequency of medical appointments, inaccessibility of facilities, and non-adapted teaching methods. We aim to spread knowledge on rare diseases to teachers, educators and the next generation, in order to promote a culture of acceptance and a world where all children have a chance to learn.
Goal 5: Achieve gender equality and empower all women and girls
Enshrined in the charter of the United Nations is the principle of equality between men and women. Unfortunately, discrimination against women and girls continues to be an issue that needs a stern response.
Research has proved that women living with a rare disease face more rejection in looking for a diagnosis and their pain is less seriously considered than that of men. But not only that, when a member of the family is affected by a rare disease, the primary carer role is most often assumed by the mother leading to a halt to professional life and inducing high levels of stress as well as physical and emotional strain.
By fighting for timely treatment as well as for appropriate social care, the NGO Committee for Rare Diseases aims to empower women and girls everywhere.
Goal 10: Reduce inequality within and among countries
The aim is to empower and promote the social, economic and political inclusion of all, irrespective of age, sex, disability, race, ethnicity, origin, religion or economic or other status. And to do this, discriminatory laws, policies and practices ought to be eliminated.
Persons living with a rare disease tend to remain a marginalised and invisible population, with little information available about their diseases and very few treatment options. They suffer inequality in accessing health care services and treatment, and in the prices they have to pay, due to their social status or their country of origin.
By ensuring that treatment and consideration of people living with a rare disease is equal at the global level, the NGO Committee for Rare Diseases will contribute to the reduction of inequality, not just in health care, but also in the labour market and global governance.
Goal 17: Revitalize the global partnership for sustainable development
The NGO Committee for Rare Diseases embodies the 17th Sustainable Development Goal. The need for multi-stakeholder partnerships at the global level is de facto enshrined in its by-laws.
The Committee aims to:
- act as an open forum to collect, share and disseminate information and research on the global dimensions of rare diseases
- encourage the dialogue between public, private and civil society groups
- boost the role of science, technology and innovation as an enabler of the 2030 agenda