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  • Director of Center
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© Research
Scientific Fields
Diseases
Organisms
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Technique
Date
26
Sep 2018
Time
17:00:00
Institut Pasteur
Address
Building: François Jacob Room: amphithéâtre François Jacob
Location
2018-09-26 17:00:00 2018-09-26 18:00:00 Europe/Paris Patients shake research tree up   “We want to be at the table and not on the menu” Peter Kapitein For a very long time, patients were the end users of health research without being involved in its process. […] Institut Pasteur Clementine Schilte clementine.schilte@pasteur.fr

About

 

“We want to be at the table and not on the menu” Peter Kapitein

For a very long time, patients were the end users of health research without being involved in its process. In the 80’s HIV patients rose against this position and have invited themselves to the table to make their voice heard: from scientific conferences to policy makers meetings. Hence their fights led to major changes in shaping new patient rights, their contribution to research and finally to their empowerment.

Please come to hear these two activists committed to make advances for the patients’ life. Each speaker will present for 15 minutes and then there will be a 30 minutes discussion, followed by an appetizer to discuss.

HUGUES FISCHER, ACT Up-Paris, founder activist and former President. Hugues is one of the founders of Act Up-Paris in 1989 and is now the unique employee of Act Up. Act Up stands for “AIDS Coalition to unleash Power”. Hugues not only became an expert on therapeutic but also on treatment access issues. He will present how the relationship has changed between people living with HIV and researchers since the 80’s.

 

PETER KAPITEIN, Inspire2live, Netherland. Peter was diagnosed with lymphoma in 2005. In 2006 he co-founded Alpes d’HuZes, the foundation that is most famous for the annual cycling event on Mount Alpes d’Huez and that raised over 150 million euro for the fight against cancer. He works at the Central Bank of the Netherlands and his employer facilitates him in this job to work three days a week for Inspire2Live, a Patient Advocacy Platform. As a Patient Advocate, Peter connects patients, researchers and clinicians to further research, treatments and care over the world and was therefore honored with a doctorate in October 2012 at the Free University in Amsterdam.

ACCESS This event is primarly intended for researchers but is also open to any patients. For people external to Institut Pasteur, it is mandatory to register online (limited to 50 seats) and come with an ID card.

Please find other information about this subject on the webpage “patients chercheurs vers un nouveau dialogue”

Location

Building: François Jacob
Room: amphithéâtre François Jacob
Address: Institut Pasteur