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the Rare 2030 young citizens ask...


An open letter from the Rare 2030 young citizens

We are the Rare 2030 Young Citizens, representing a new generation of advocates, patients and actors in the rare disease community. We come from diverse backgrounds, different countries and have different experiences of rare diseases – as patients, young parents, doctors, students, and junior policy advisors.
Nevertheless we have all come to the same conclusions about what needs to happen for a better tomorrow for the 30 million people living with a rare disease in Europe (the World), where no one is left behind.

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Dear Members of the European Parliament, dear European Commissioners, dear present policy makers and thought leaders,

While the European Union has fostered tremendous progress in the past decade to improve the life of people living with a rare disease in Europe, it is undeniable that the world we live in today is different than the one we knew back then. We are a generation in a new context, with new challenges but also new opportunities. It has taken a generation to get where we are. Now it’s time to listen to what we have to say about the future for Europe to indeed be a place where no one is left behind.

In ten years’ time, we will be living with a rare disease. In ten years, we may also be parents of a child living with a rare disease. By 2030, we want to live in an inclusive society that recognises
all our needs and challenges.
We want to live in a society that acknowledges that our conditions are more than collections of physiological symptoms but rather require a holistic approach to be fully understood and, more importantly, addressed. We want to have access to the right diagnosis without having to go through the all too common diagnostic odyssey and to be given the appropriate treatment wherever we live and whatever our socio-economic status may be.
In ten years’ time, we will be doctors, nurses, psychologists. By 2030, we want to work and collaborate with colleagues in our respective countries and throughout Europe to whom rare
diseases are not an abstract notion or mystery but a surmountable challenge. 
We want – as doctors, nurses, health and social care providers of any kind – to know that collaboration and help
beyond national borders exists to take the best care possible of people living with a rare disease.
We hope that we – and the generation of health care providers that will follow ours – will benefit from a solid education on rare diseases and on the means we have at our disposal to appropriately recognize, diagnose and treat them. It is time for us to become the best version of our professions to make sure that our patients can live the healthiest and happiest life they can.
In ten years’ time, we will be policy makers. By 2030, we hope we will not have to advocate anymore for the need to have a European policy framework that encompasses all the important
aspects of rare diseases and addresses the needs of the rare disease community as a whole. 
We want Europe to be an example of fairness, equity and inclusiveness in all areas having an
impact on the lives of people living with a rare disease. We want policy makers to have understood by 2030 that rare diseases are a public health priority that highly benefits from cross-border collaboration, in terms of diagnosis, care and research, to indeed guarantee that we are a society that truly leaves no one behind.
In ten years’ time, we will be sitting where you are today and, we hope, as part of a stronger rare disease community all together. In the next ten years we want to be the generation of
change. 
As the leaders of today you can make a meaningful difference, to drive change for our generation, and the generations of rare disease patients, carers, doctors and policy makers to come.

Dear Members of the European Parliament, dear European Commissioners, dear present policy makers and thought leaders, please don’t let the health and well being of 30 million people
living with a rare disease in Europe be left to luck or chance. Consider our words in your policies changes today.

The Rare 2030 Recommendations

The Rare 2030 Recommendations: The future of rare diseases starts today” presents the conclusions of the Rare 2030 Foresight Study, initiated by the European Parliament and co-funded by the European Commission Pilot Project and Preparatory Actions Programme.

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