Nordic Rare Disease Summit 2023
On 17 April 2023, during the Swedish Presidency of the European Union, a
wide range of delegates
–
policy makers, healthcare professionals and
representatives from patient associations, health authorities, media,
academia, life science, and the tech industry - will gather in Stockholm for
the Nordic Rare Disease Summit 2023.
Sundhedsudvalget 2022-23 (2. samling)
SUU Alm.del - Bilag 82
Offentligt
The summit will serve as a platform for policy discussions within rare diseases, as well as facilitate the exchange
of best practices, aiming to elevate rare diseases as a national health priority in the Nordic countries. It will be
organized and financed by
Takeda Pharma,
with contribution from
Alexion AstraZeneca Rare Disease, Novo Nordisk
and
Sobi
as a hybrid meeting to enable virtual participation. Partners include
Rare Diseases Sweden
(national
association representing approximately 70 rare diseases patient organizations and 16 000 individual members) and
Lif Sweden
(the trade association for the research-based pharmaceutical industry) as well as prominent
organizations from across the Nordics and Europe, including:
EURORDIS
–
Rare Diseases Europe, a unique, non-profit alliance of over 1000 rare disease patient organizations
from 74 countries
SBONN
- a network of six umbrella patient organizations for rare diseases in five Nordic countries
EUCOPE
- The European Confederation of Pharmaceutical Entrepreneurs
EFPIA
- The European Federation of Pharmaceutical Industries and Associations.
Background
The impact of rare diseases on both patients and their families can be profound. Rare diseases often lead to
negative impacts on
patients’
quality of life, including high levels of disability, stigmatization, and social isolation.
As patients living with rare diseases in the Nordic countries are facing similar challenges, as well as opportunities,
related to diagnosis, social wellbeing, and quality of care, the rare disease area requires stronger Nordic
collaboration and greater sharing of experiences. This could ultimately result in improving the quality of care and long-
term benefits for both patients and the healthcare systems in the Nordics. The summit will build on both the strong
engagement and legacy of the first Nordic Rare Disease Summit in 2021 as well as the focus given on rare diseases
during the French and Czech Presidencies of the EU during 2022. That is why it is being investigated to host
Nordic Rare Disease Summit 2023 under the auspice of the Swedish Presidency of the EU.
The first summit
On 12th and 13th April 2021, the first Nordic Rare Disease Summit brought together 486 participants from 17
countries to share experiences and launch a new Nordic Roadmap for Rare Diseases. Her Royal Highness Crown
Princess Mary of Denmark, Patron of Rare Disease Denmark, inaugurated the summit, which included keynote
speeches, panel discussions, and active engagement by the audience.
Following the summit, The Nordic Roadmap for Rare Diseases - which outlines the status and recommendations for
how to reduce the diagnostic delay for people with rare diseases, empower patients and their relatives, and secure
access to care
–
has been shared with over 500 organizations and individuals active in the rare disease field. At a
meeting in November 2021, the roadmap was used as a reference point in the planning of future activities by the
Nordic Network for Rare Diseases under the Nordic Council of Ministers. In addition, over 20 follow up activities have
taken place across the Nordic region based on the first summit.
Building on the momentum
The Nordic Rare Disease Summit 2023 aims to further elevate the efficacy and relevance of rare disease policy
across the Nordic countries by driving tangible progress in the areas of early diagnosis, patient empowerment and
access to innovation.