HRH The Crown Princess' opening speech at European Conference on Rare Diseases and Orphan Products
(The spoken version shall take precedence)
Ladies and gentlemen,
As patron of Rare Diseases Sweden, it is an honour to have this opportunity to address you all.
I wish I could welcome you all to Sweden and Stockholm, at this the most beautiful time of the year. However, as we all know, meeting each other in person is not an option right now.
I fully understand the disappointment of not being able to meet face to face. From speaking with Malin Grände of Rare Diagnosis Sweden, I have come to understand how important this conference is, as a meeting place and a chance to connect with others in the same situation as you.
Still, until we can travel again, we can at least meet online, like this.
Let me also say how proud I am that Sweden is hosting the 2020 conference – at a time when coming together is maybe more important than ever.
Over the years, I have had the opportunity to meet a number of children and young people with rare diseases and disabilities. Learning about the challenges that these children and their families face, has made a deep impression on me.
Challenges like: navigating through the health care system, finding the right doctors and treatments, struggling with emotional and sometimes financial stress… that takes energy, strength and resilience.
That is why organizations such as yours, and meetings such as this, are so important:
To give voice to those who need to be heard.
To share knowledge and experiences.
And to remind us, that even when the world gives you plenty of reasons to feel that way, you are not alone.
Now, I would like to wish you all a rewarding and successful conference.