Nordic Rare Disease Summit 2023

April 17, Sweden, Stockholm

Together We Can Make A Difference For More Than
1 Million1 People Living With Rare Diseases In The Nordics!

On April 17, 2023, the second Nordic Rare Disease Summit was arranged under the Swedish EU presidency. The Summit is a platform for policy discussions and the exchange of good ideas. Decision makers, health care professionals, patient organizations, media, academia, and life science companies came together under the main theme  “Rare diseases – setting the scene for change” to discuss three key focus areas: Early Diagnosis, Patient Empowerment and Access to Innovation.
READ THE REPORT

Key Focus Areas

Early Diagnosis

On average it takes six to eight years before a person with a rare disease receives the correct diagnosis. Approximately 40% of all patients with a rare disease are initially misdiagnosed.2,3 Acorrect diagnosis empowers patients, enables access to innovative care and improves quality of life.

Patient Empowerment

A challenge in rare disease is to fully empower patients in their own health journey. Systematic involvement of patients and caregivers, acknowledging their unique source of knowledge in their own situation, is essential.

Access to innovation

As part of addressing the unmet medical needs of people living with rare diseases break the access deadlock by recognizing the value of treatment in a holistic way and paying for innovation that adds true value for patients, while securing financially sustainable healthcare systems.

The 2021 roadmap

The first Nordic Rare Disease Summit, organized as a virtual meeting on 12th and 13th of April 2021, gathered a wide range of rare disease experts, decision- and policymakers as well as representatives from NGO’s, patient organizations, academia and industry from across the Nordic countries.

This Nordic Roadmap for Rare Diseases sums up key messages, discussions and new knowledge from the summit – with an aspiration to provide policy guidance relevant for the Nordic countries, recommendations for future co-operation and a shared call for action.

See full roadmap

Key speakers

Acko Ankarberg Johansson
Minister for Health Care, Sweden

Yann Le Cam
Chief Executive Officer of
EURORDIS - Rare Diseases Europe

Read interview with Yann →

Anna Wedell
Prof. Medical Genetics, Director of Precision Medicine Center Karolinska

See more speakers

Meeting Report from first rare disease summit

The report summarizes the Nordic Rare Disease Summit 2023, arranged under the Swedish EU presidency. The main theme was “Rare diseases – setting the scene for change” and The Summit addressed three key action areas and how to put them into action: Early Diagnosis, Patient Empowerment and Access to Innovation.

Read the full report →

To have a rare disease is not rare

It is not uncommon to have a rare disease. There are over 7000 different rare diseases which in many cases lead to disability, stigmatization, and social isolation.4 The impact on the quality oflife for those who live with rare diseases, and their families can be profound.This is what we want to change!

Rare genetic and metabolicdiseases can have symptoms that vary widely and progress very differently fromperson to person, which means that people affected by these diseases arefrequently misdiagnosed.

Nordic exchange of experience to improve care of rare diseases

It is time to get our heads together to make a change for people with rare diseases!

Meeting Report from the 2023 rare disease summit

The report summarizes the Nordic Rare Disease Summit 2023, arranged under the Swedish EUpresidency. The main theme was “Rare diseases – setting the scene for change” and The Summit addressed three key action areas and how to put them intoaction: Early Diagnosis, Patient Empowerment and Access to Innovation.

Read the full report →

Nordic Rare Disease Summit 2023 Partners

Nordic Rare Summit Disease