Opening Remarks by H.E. Mr. Sven Jürgenson, Permanent Representative of Estonia at the Rare Disease Day Policy Event, New York, 21 February 2019

Rare Disease Day Policy Event

Opening Remarks by H.E. Mr. Sven Jürgenson, Permanent Representative of Estonia

February 21, New York

Excellencies, Distinguished Guests, Ladies and Gentleman,

It is my great honor to give the opening remarks today at this special event. I would like to begin by thanking NGO Committee for Rare Diseases, Ågrenska, Eurordis, and their partners for their important work, and also for making this event possible today. I would also like to thank all the participants who form such a unique and effective community in furthering the agenda of rare diseases. I know that many of you flew in especially for the event, and it is really a pleasure to have you with us. It is an honor for Estonia to be the main sponsor of the event for the second time – first, in 2016 at the inauguration of the NGO committee for Rare Diseases, and now for the second time, to celebrate the Rare Disease Day here at the UN. We hope for our continued good cooperation!

Ladies and Gentlemen,

There are more than 6000 rare diseases in the world and an estimated 300 million who suffer from them. They are called rare, but taken all together, it is a significant number of people who are affected by different rare diseases. This is why we should aim to create partnerships that benefit the rare disease community, both on national as well as International level, between public and private sector and between all relevant communities of patients, medics, scientists and others. The UN provides an excellent platform for facilitating such partnerships, and we should harness its power any way that we can – either through different negotiations or establishing separate initiatives that would help people living with a rare disease. We must keep in mind that our main goal should be that of 2030 Agenda – that is the imperative of leaving no one behind, which, by definition, also includes leaving no person living with a rare disease behind. 2030 Agenda is for all people, and our work here is to ensure that we will live up to this precious promise.

The vision of increasing partnerships and meaningful collaboration to be able to offer better care and support for the people living with a rare disease aligns perfectly with Estonia’s vision. In this connection, Estonia has joined the European Joint Programme on Rare Diseases, through which we are financing transnational science projects. We are also proud to have Estonian scientists participating in this programme. For Estonia increased collaboration has already shown positive results. For instance, through participation in the European Reference Networks, Estonia’s doctors have already received beneficial advice for diagnostics and treatment of different rare diseases. Having already benefitted from such programmes, we would like to see these kind of initiatives to spread worldwide.

In our policy choices, Estonia is firmly guided by the principles of efficiency, equality and empathy. This is also the case when it comes to addressing rare diseases – we believe that by working together with others, we could make the system more efficient and therefore more helpful for the people living with a rare disease. We believe that everybody should be able to enjoy equal access to the treatment of their disease, no matter how rare they are. And lastly, but perhaps most importantly, empathy – at the heart of the quest for efficiency and equality is the centrality and preciousness of human life. We firmly believe that it is our collective duty to guarantee a dignified life, to help to alleviate suffering, and help every individual thrive.

Estonia is determined to play an active role in bridge-building and facilitating cooperation also in other areas. This is, for instance, why Estonia is running for the non-Permanent seat of United Nations Security Council for the term 2020-2021. The principles of efficiency, equality, and empathy, however, are equally valid throughout our work.

Ladies and Gentlemen,

Even though Rare Disease Day is technically taking place on the last day of February, nevertheless we are here to have an early celebration of that day. It is an important day that gives us a precious platform to promote and raise awareness about the challenges associated with rare diseases, but also to highlight opportunities for further cooperation. We are here to celebrate your work and the achievements already achieved, but also to acknowledge that a lot of work still lies ahead. Yet, as the saying goes, when the goal is set – and I believe it is firmly set in 2030 Agenda – the only thing to do, is to go forward. I wish you an excellent event ahead, productive conversations, inspiring ideas, and most importantly continued motivation to carry out the important work you are doing.

I would like to leave you with a well-known African proverb. It says that if you want to go fast, you need to go alone. If you want to go far, you need to go together. I really believe that with such a strong community, we are able to go fast and far in making sure that we are in a better position to address rare diseases. Estonia is honored to belong to this community.

Thank you!