OUR ACTIVITIES
Summary of our Annual Activity Report
The number of staff at the office of Rare Diseases Sweden increased from four to seven, which both broadened and strengthened our activities during 2021. The Chair and other Board members also participated more frequently in meetings, conferences, reference groups and interviews. This contributed to increased visibility and greater impact for the organisation.
One result was a record number of advocacy meetings – around 220 over the course of the year. This was partly due to the expansion of the national office and partly to increased engagement from Board members. In addition, we had become more accustomed to holding meetings digitally.
National workshops for a national strategy
Together with Ågrenska and CSD i Samverkan, we held two national workshops on the development of a national strategy for rare health conditions. Around 60 other key stakeholders in the rare disease field took part. These meetings demonstrated a clear consensus on the importance of and need for a national strategy for rare health conditions, regardless of whether participants represented healthcare or other types of organisations.
Three new short films highlighting the need for a national strategy in this field were launched in 2021 and are available on Rare Diseases Sweden’s YouTube channel.
Sällsynt mitt i livet (SMIL) – Rare in Midlife
The new project with Arvsfonden – Sällsynt mitt i livet (SMIL – Rare in Midlife) – has exceeded expectations, despite the pandemic and meetings being held entirely online. The project is both important and highly appreciated. Through discussion groups focusing on everyday life and existential issues, we work to reduce loneliness and promote better mental health among people living with a rare health condition in midlife.
Despite the pandemic, we have been able to carry out a wide range of activities, both as part of our regular work and within our projects. Working digitally has created new opportunities for us to reach more people – both members and others.
Dedicated patient representatives
Our regional presence has grown stronger. Rare Diseases Sweden has dedicated patient representatives in every region who work together with the Centres for Rare Diseases (CSD) and with each other.
As part of our regional activities, we have held joint meetings between patient representatives and CSD, as well as national meetings bringing together patient representatives from across Sweden. Regional online coffee meetings have also been organised for members.
Ågrenska family programmes
After a break of several years, we have once again regularly participated in Ågrenska’s family programmes, meeting both members and non-members. Digital meetings have enabled us to reconnect with familiar faces as well as meet new families.
Precision medicine
Precision medicine is a new area of focus for us. During the year, we were invited to participate in working groups, a hearing in the Swedish Parliament and several webinars.
Social Media
Our communication through social media reached new heights in 2021. We are publishing more posts, attracting more followers and reaching an increasing number of people with our messages.
Member survey
Towards the end of the year, we conducted our major member survey and received approximately 1,500 responses.
The year concluded with the UN adopting a resolution on rare health conditions, “Addressing the Challenges of Persons Living with a Rare Disease and their Families”.