Läkemedel för sällsynta sjukdomar – hög tid för ett tydligare statligt ansvar

On Wednesday 24 June, we organise Life Science-dagen in a large tent at Hamnplan, in collaboration with AbbVie, AstraZeneca, Chiesi, Lund University, Novo Nordisk, Roche and SmiLe Venture Hub.

At 08.00-08.45, there will be a seminar in Swedish on ”Läkemedel för sällsynta sjukdomar – hög tid för ett tydligare statligt ansvar”, hosted by AstraZeneca. Please note that the program and its speakers/panelists might be updated before it takes place – updated program in the official program for Almedalsveckan.

Seminar focus

Patients with rare diseases are among the most vulnerable in the healthcare system. Their numbers are small, their needs are often urgent and life‑critical, yet access to treatment is in practice frequently uncertain, slow and unequal, and decision‑making processes take an unreasonable amount of time for patients who do not have time to wait.

There is a national ambition to strengthen access to treatment for patients with rare diseases. However, ensuring access to medicines for these patients will require a stronger state commitment, both in terms of governance and financing. The seminar will present a report from the consultancy Macanda, which provides an evidence base for the introduction of a targeted, state‑funded financial support scheme for medicines used to treat rare diseases.

The seminar will bring together representatives of policymakers, government agencies, healthcare providers, patients and research‑based pharmaceutical companies for an in‑depth discussion on how the system can be developed so that patients with rare diseases also receive the medicines they need, in time and regardless of where in the country they live.

Speakers

• Anna Alassad, Chief Strategist, Dental and Pharmaceutical Benefits Agency (TLV)
• Edvin Bernhardsson, Second Vice Chair of the Primary Care Committee, Christian Democrats (KD)
• Ella Bohlin, Corporate Affairs Director Nordics, Alexion AstraZeneca Rare Disease
• Joakim Ramsberg, Head of Research and Society, Hjärnfonden (the Swedish Brain Foundation)
• Marie‑Louise Hänel Sandström, Deputy Member of the Committee on Social Insurance and Health, Swedish Parliament (Moderate Party, M)
• Sanna Carlsson, Swedish National Organisation for Rare Diseases (Riksförbundet Sällsynta Diagnoser)

Life Science-dagen aims to establish a high-profile, unified forum and meeting point dedicated to life science at Almedalsveckan, in line with our role as the largest life science park in Scandinavia.

During Almedalsveckan 2026 Medicon Village also organise Skånes Innovationsarena on Thursday 25 June.

For more information on Life Science-dagen, please contact mikael.lagerwall@mediconvillage.se.