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