This year marks the 10th year anniversary of the Lupus Awareness Resolution celebrated at New York State Capitol in Albany, New York. The proclamation was initiated by patient advocates from across New York state and lives on today. Lupus patient organizations including LFA, LRA, LADA and Lupus Friends and Family Foundation (LFF) come together to meet with the Senators and Assembly men and women supporting lupus patients, our bills for positive change and our efforts in improving conditions lupus patients live in. If you are interested in joining us, please contact us at firstname.lastname@example.org.
Last year we had a blast spending World Lupus Day with our fellow lupies in Europe. This year we are spending World Lupus Day in Copenhagen and looking forward to hearing what they have been up to in Denmark. Happy World Lupus Day!
Join us for a lupus support group meeting in Manhattan on April 28, 2018. Sign up through Meetup. It is free to attend and you are welcome to bring a friend or loved one who has lupus or interested in learning more about lupus. At this event, we will talk about how we are feeling and share our successes so others can replicate and gain from it. Join us this Saturday!
Lupus Friends and Family attends a couple of patient advisory boards, bringing the patient voice to professional drug makers and researchers.
Giving them more patient perspective.
Today we got to go in front of a whole class room full of students about to become pharmacists. They needed to hear from a patient what it is like to live with chronic illness, the ups and downs, the fears we deal with, the conversations we have and the lies we tell about our suffering. It was an eye-opening kind of day for the pharmacists-to-be.
Lupus Friends and Family Foundation’s CEO is speaking at the Clinical Trial conference in Copenhagen, Denmark today. Yet again we are the only patient representative and advocating in a room full of industry leaders and pharma professionals. Highlighting the need to involve patients before, during and after clinical trials.
EUPATI is the European Patient Academy and they provide patient education in order to allow patients to have effective conversations with the healthcare industry. Their information is available online free of charge, however, they also have an intensive and very high level program that only a select few get to attend. Our CEO was selected as a candidate for this 14 months long fellowship. She started the course study in September 2017 and this week was the first time she met her fellow students in Madrid, Spain. Patient advocates from all over the world came together to learn the basics of life science, research and development and much much more. Charlotta is becoming a certified patient expert and we cannot wait to learn from her.
Today we were invited to return to the Pharmacy Association and ensure the patient voice was heard and considered during high level discussions amongst a room full of pharmacists.
Today Lupus Friends and Family started a collaboration with the The Pharmacy Association. The organization is working on how to improve conversations between the pharmacy and the patients. Today they got to stop up and listen to a new way of thinking – the patient perspective. It allowed the pharmacists and pharmacy professionals to stop assuming they know what patients want and instead simply ask them. It was a great start to a projected longterm partnership.