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Unmet medical needs in rare diseases: A case study from Amyloidosis


04 Jul 2023 08:15 to 09:30


European Parliament
60 Rue Wiertz
1047  Brussels


Health & Consumers

Event Description

Hosted by MEP Susana Solís Pérez, this event will bring together policymakers and experts for a discussion dedicated to raising awareness of rare diseases and the impact they have on patients and European health systems, drawing upon Amyloidosis as a case study. 

Across Europe, there is an urgent need to address unmet medical needs, especially in rare diseases; which together affect over 36 million people in the EU.

The time to tackle the challenges in rare diseases is now. During the revision of the legislation on rare diseases as part of the ‘Pharmaceutical Package’, it is crucial that the EU encourages the development of future treatments for rare diseases by incentivising innovation. This will both help to address unmet medical need for patients with rare disease and create a life sciences sector that can lead on a global scale.

During the event, policymakers and experts from the field will draw upon the example of amyloidosis as a rare disease area where thousands of patients continue to suffer from a condition that is underdiagnosed and underrecognised. Amyloidosis is the term for a group of rare diseases in which a protein called amyloid builds up in certain parts of the body, including the heart, kidneys, liver, and nervous system. This build-up then negatively impacts the function and health of the affected organs. While there are care options to help manage symptoms, there is no cure. 

Join us for an empowering discussion dedicated to raising awareness of rare diseases and looking towards the future of the European life sciences sector.   



EEB - European Environmental Bureau
(Senior) Mercury Policy Officer
Global Covenant of Mayors for Climate & Energy (GCoM)
Operations Officer GCoM
Insurance Europe
Actuarial intern
European Union Agency for the Space Programme (EUSPA)
Galileo Operations Evolution Engineer
European Union Agency for the Space Programme (EUSPA)
Galileo Security Operations Officer