Know Your Lupus is a course created specifically for the newly diagnosed lupus patients delivered through 5 modules over 2 months. Lupus patients learn about the disease, symptoms, medications, and treatments as well as gain insights to how to prepare for a doctor’s visit, ask for what they really need, understand how they can help themselves, physical and occupational therapy practices, psychological difficulties of having a lupus diagnosis and how to deal with it, and much more. The speakers were from the best hospitals with the most insightful information. The entire course was facilitated by our very own CEO, Charlotta Norgaard. The course runs from September-November 2017.
On August 29, 2017, Lupus Friends and Family Foundation was a contributor in the Board of the National Strategy for Personalized Medicine workshop on public-private research collaboration in the area of personalized medicine. Attendees from all over the world gathered to openly discuss barriers and opportunities for public-private research collaboration.
Personalized medicine has the potential of becoming an important research area with promising possibilities within public-private collaboration on better and new treatment forms – e.g. medicines – that will benefit patients. An important prerequisite for realising this potential is a clear and secure framework for collaboration among public researchers, clinicians, patients and private actors along the entire research value chain.
Lupus Friends and Family Foundation was 1 of only 2 participants representing patients. We were given time to speak openly about what is missing in research and healthcare from a patient perspective and put focus on why patients must be part of the entire Discovery and R&D process and through the product lifecycle in order to improve research outcomes and overall health for the chronic ill.
Live lupus webcast. This time we are talking about the fact that we live with an invisible disease and that many people don’t believe we really are sick. Join us!
Lupus Friends and Family joined forces with other patient advocates in the National Lupus Advocacy Summit on Capital Hil, Washington DC on June 27, 2017. Patient advocates from across the US came together to ensure politicians understood that lupus is a horrific, chronic disease and that lupus research is a must. Patients were able to share their personal lupus stories and Lupus Friends and Family Foundation was selected to deliver additional messaging to request support. The efforts of all present resulting in an allocation of $5 millions to lupus research. What a day!
Attended at the defence of the PhD submittal in lupus research by Janni Lisander Larsen, RN. Janni invited Lupus Friends and Family to attend this research meeting where she showed her lupus study results and shared a powerful video made to express the emotional side of living with a chronic illness like lupus. The fim project ”An illustration of Lupus” is based on real experiences from patients living with systemisk lupus erythematosus (SLE).
Lupus Friends and Family attended the Lupus Federal Working Group in New York, NY.
Lupus Friends and Family will celebrate World Lupus Day in Europe. This year we are supporting lupus patients in Denmark. The program offered an insight to what lupus is and what is being done about it. Several speakers including Niels Heegaard, Statens Serum Institut og South Danish University Hospital, Søren Jacobsen, Superising MD and Rheumatologist, Rigshospitalet, and Contance Jensina Ulff-Møller, MD and researcher, Rigshospitalet discussing their efforts in the subject of Lupus and instilled patients with hope and motivation for the future.
The Danish patient organization and network, SLE DK, organized the event and provided attendees with statistics of lupus in Denmark.
May 2017 Lupus Friends and Family Foundation joined forces with the European Patients Academy aka EUPATI, a patient education program geared at equipping patients with tools to engage in conversations and assignment with all areas of drug development. Lupus Friends and Family is an official supporter of their platform and service offerings and offer in-kind services to generate interest and improvements. EUPATI was started as a European effort but has quickly moved outside European boarders including Brazil, Japan and the US.
Lupus Friend and Family is attending the Annual ACR Meeting. Meet Charlotte at Boot 1550, or email email@example.com.
You can call/text 203-400-7110 to set up a time to chat.
See you there.
Our founder, Charlotta Norgaard, is interviewed on how to use creative expressions to manage chronic pain. Click here to read the interview Founder Interview
JAAPA Journal of the American Academy of Physician Assistants
September 2015 – Volume 28 – Issue 9
In this issue, Founder, Charlotta Norgaard, is featured as the patient voice and her painting graces the cover of the magazine. Click here to read the article JAAPA Article