Lupus Friends and Family Foundation has been a supporter of EUPATI for some time and has provided in-kind services to help the organization improve. In May 2017, our CEO, Charlotta Norgaard, became a board member of the Danish platform. Charlotta was nominated and received 100% of the votes and today she became the Chair of EUPATI Denmark. We are proud of Charlotta and excited for the great partnership we have formed with the organization. Congratulations!
Today we had the pleasure of meeting with a large US based CRO organization who handles clinical trials for multiple organisations and pharmaceutical companies. Imagine the look on our faces when we learned that none of the people in the room had ever spoken to a patient before. We have got to do better than that! Lupus Friends and Family was able to provide great details on the patient experience during clinical trials and add pointers on how to improve clinical trials.
Jesper Westley is an exceptional photographer specializing in healthcare and nonprofit organizations. His work is known throughout the world and he came to the home of Charlotta Norgaard, CEO of Lupus Friends and Family Foundation for a special feature in the Arthritis Foundation of Denmark magazine. Proud moment.
Lupus Friends and Family Foundation in collaboration with EUPATI attended the Biomarker AGORA 2017 conference at the University of Copenhagen, Denmark. The conference was focused on biomarkers, how they are used and how to expand them into every day healthcare systems.
The Arthritis Foundation of Denmark interviewed our CEO, Charlotta Norgaard, to undrestand what it is like to live with lupus and the monster within. Charlotta gave great and relatable answers to very tough questions often misunderstood or ignored.
Each and every year Lupus Friends and Family Foundation participate in the lupus walk in New York City. We gather a team of walkers and walk to generate lupus awareness, which is critical in order to ensure researchers continue to look for new treatment options and a cure. This year is no different. Contact us if you and your company or loved ones want to join the Lupus FFF team on October 14, 2017 by South Street Seaport, New York, NY.
Our CEO, Charlotta Norgaard, has participated in several clinical trials and continues to help researchers and organizations become more aware of the patient experience and listening to the patient perspective in order to make critical improvements for better participation and study outcomes. Today, Charlotta will speak on Outsourcing in Clinical Trials and how the patient should be engaged before, during and after clinical trials.
Copenhagen Centre for Regulatory Science 3rd annual Conference was held in Denmark on October 2, 2017. Our CEO, Charlotta Norgaard, a native Danish speaker, attended and represented the patient voice.
It is important that patients are not just included in clinical trials but that we are included at the table when the big decisions are made. In this patient interview, our CEO, Charlotta Norgaard, was asked to describe in great details the experiences she had had during and after an interventional clinical trial and provide suggestions on how this and other clinical trials can be improved upon to consider the patient as a valuable co-creator, not just a test bunny.
Lupus Patient focused drug development meeting was spun out of a conversation a couple of years ago and became a reality when several lupus patient organisations joined forces to ensure the FDA would meet with lupus patients and hear us out. The Lupus PFDD meeting offered a chance for lupus patients to share their stories, spread awareness of what it is like living with this horrible disease and get the FDA representatives to listen and take notice. Lupus Friends and Family Foundation was there to support the efforts and collaborate with our fellow US lupus organisations.