Two Danish delegates for the upcoming third EUPATI Expert Training Course27-05-2017
Charlotte Nørgaard and Jeanette Andersen are both active patient advocates and they both suffer from Lupus, which is a chronic autoimmune disease that can damage any part of the body.
Experienced patient advocate
Charlotte Nørgaard just returned to Denmark after 25 years in USA. She felt much alone when she was first diagnosed with lupus 14 years ago. The diagnosis led to a very active patient advocacy life in USA, an experience, which has shown to be valuable, entering the Danish health care system.
“When I lived in New York, it became my passion to share knowledge about Lupus with patients, politicians and other stakeholders. I advocated for new laws and changed lives. The successful results have proven to be a big benefit for me having returned to Denmark. Entering the Danish health care system is a fight. It is a puzzle, there is no guidance or clear directions,” Charlotte says.
Charlotte has a professional background from the medical industry and is very convinced that patients have to sit at the table when clinical trials are planned and conducted. “We have to be involved in medicines development,” she says,” we can open decision makers eyes; we know what treatment means to patients, what is important and what is not.”
We have different priorities
Jeanette Andersen has been a Danish patient advocate almost since she was diagnosed in 2011; today she is a contact person for SLE/lupus in Denmark, EULAR YoungPARE Trustee and LUPUS EUROPE Secretary. She participates in the annual EULAR medical conference, where she also is on the programme with presentations for the clinicians.
“I really enjoy being a patient advocate and I applied for the expert training course, because I need to get a deeper understanding of medical research. I believe that patients may play an important part in medicines development, since our priorities might be different from the clinical doctors, who mainly focus on medical treatment. Patients need to take responsibility for their own bodies and a major priority is to reduce the side effects of treatment,” Jeanette explains.
The Danish EUPATI Network
The Danish EUPATI Network was established in 2014, when EUPATI consortium member Biopeople, University of Copenhagen – and Danish supporters of the project, initiated a conversation on patient involvement in medicines research and development between patients, academics and industry representatives in Denmark. In October 2015, EUPATI created the National Team in Denmark. Chairman of the Danish Platform is Lotte Klim, who graduated from the EUPATI Expert Training Course in 2016.
Read more: https://www.eupati.eu/denmark/