24 Nov

Charlotta Norgaard sworn in as Chair for EUPATI Denmark

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!

16 Nov

Speaking at a world known CRO

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.

01 Nov

Biomarker AGORA 2017

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.

14 Oct

Lupus Walk, New York City

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.

10 Oct

The Patient Experience During Clinical Trials

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.

26 Sep

A patient perspective – a patient interview

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.

25 Sep

Lupus PFDD meeting in Virginia, MD – Sept. 2017

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.