The SDA is excited to announce that our third Summit will be held on November 30, 2023 in the European Parliament. This year, our focus will be to present ‘The Ideal Pathway’, outlining the unmet needs of people with Skeletal Dysplasias from childhood, adulthood, and old age. Our hosts, MEP Radka Maxová and MEP Jonás Fernández, members of the European Commission, health and social experts, as well as members from all of the SD Alliance groups, are looking forward to bringing political attention to the long-neglected list of needs of the SD community.
With the help of health and social experts, Luca Sangiorgi and Saulo Fernández, as well as members of the European Commission, we will discuss the main challenges in the lives of people with SD that need to be addressed by EU Health and Disability policies. Consequently, we will determine the avenues that could bring short and long-term progress to the goals of the SDA such as the European Reference Networks, Accessible EU and the Disability Strategy, as well as other ongoing legislation changes. The Summit will be not only be an opportunity to make decision-makers consider Skeletal Dysplasias when they draft EU laws, but also for us as an Alliance to learn about where we should focus our efforts to make the most impact.
Our presentation of the pathway will have a two-way focus, shining equal importance on both the health as well as social needs of people with SD from childhood to old age. From the impact of stigma, the multiple health implications, discrimination in education and the workplace, to the need for better support for people with SD and their families, we will look at what we can do to ensure that people with SD are treated with dignity and enjoy a full state of health. To deliver these messages in an impactful way, we are happy to count on the participation of our own SDA members to present the pathway stage by stage, as well as to lead a round table that will bring insight into what more needs to be done.
Hopefully, with our constant efforts, there will be a day when each of the needs we have presented are no longer needs, but instead rights afforded to every person with a Skeletal Dysplasia.
We look forward to seeing and speaking with political figures, experts, and our members attending the Summit, and hope that the event will bring us closer to our goals.
Please find the agenda for the Summit below.
