ALK Positive Europe - Strengthening the voice of ALK-positive cancer patients in Europe
ALK Positive Europe (APEU) was founded in 2022 and has its origin in a Facebook group of European patient advocates who were supported in the beginnings by Gina Hollenbeck.
In Europe, there are several patient organizations and groups that advocate for ALK-positive patients limited to their own countries.
The size of these associations and groups varies greatly from country to country - from 25 to over 550 members. In some countries, there are only individual ALK+ ambassadors because of the small population.
For a strong representation of the interests of ALK-positive patients in Europe, it therefore made sense to combine forces and know-how beyond national borders and to found an umbrella organization.
ALK Positive Europe (APEU) is a patient-driven non-profit organization that connects patient communities, associations, and lung cancer ambassadors across Europe.
We believe that the local ALK Positive groups and organizations are the experts on all patient issues and concerns in their respective countries. APEU is therefore not a pan-European support group.
Patty Saccenti (Italy) and Irfan Gilani (Denmark) at the European Lung Cancer Conference.
Our aim is to improve the quality of life of ALK-positive patients and transform an incurable disease into a chronic and hopefully curable one. We are committed to improving access to state-of-the-art healthcare, clinical trials, drugs, and therapies for all European patients.
APEU is the largest community of organized ALK-positive patients in Europe, with to date 13 members from Norway, Sweden, Finland, Denmark, Germany, The Netherlands, United Kingdom, Switzerland, Belgium, France, Italy, Spain and Greece who are collectively representing over 1,700 patients and care givers.
We offer our members a platform to collaborate and share information about ALK-positive patients based in Europe. We provide a resource for members to find EU-based trials accepting ALK-positive cancer patients. Our EU Research and Expert Map is a tool for members to find European ALK-positive cancer researchers and experts worldwide.
With ALK Positive Outreach we coordinate efforts around raising awareness and building partnerships for research and advocacy with decision makers at the European Commission level.
We take all stakeholders into account in our work. This includes representation of ALK-positive patients and support for funding proposals to advance research and therapeutic modalities that may lead to clinical trials, improving the quality of life and life expectancy for ALK-positive patients.
Cross Border Networking Events bring together EU-based and international experts and researchers to foster collaborations. With our newsletter we keep stakeholders informed about ALK-positive cancer related research, diagnosis, management, and therapeutics in Europe and internationally. We offer a single point of information, contact, and access to ALK-positive patients based in Europe for the European Commission, national and transnational policy makers, and pharma.
To make the voice of ALK-positive patients even louder in Europe, we are looking for more European member organizations, patient groups and committed lung cancer advocates to join us in fulfilling our vision: Uniting ALK-positive patients towards a cure!
Are you interested in becoming a member, do you want to support us, or do you have any questions?
Please get in touch with Nicoline Ehrhardt: contact@alkpositiveeurope.org
Our Board: Anke Niekus (The Netherlands), Nicoline Ehrhardt (Germany), Patty Saccenti (Italy), Pilar Muñoz (Spain), Andrej Krivda (Switzerland), Johanna Isakkila (Finland), Afroditi Konidari (Greece).
Research Committee led by Afroditi Konidari & Stian Andre Agnes, Advocacy Committee led by Pilar Muñoz & Nicoline Ehrhardt
Article Author: Nicoline Ehrhardt (Germany)
