Make Your Voice Heard on Lupus Drug Development!
I received an email from Kathleen Arntsen who is the President/CEO of the Lupus and Allied Diseases Association, Inc. I am excited to share the information below…..
The national lupus patient advocacy community is excited to announce that people with lupus will have the chance to be part of a history-making project that includes a meeting called Lupus: Patient Voices on September 25 in the Washington, D.C. area. This very important effort is a tremendous opportunity for individuals with lupus to contribute to lupus drug development by sharing how the disease affects their daily lives and their thoughts on current and future treatments.
If you have lupus or are the parent of a child with lupus, we urge you to make your voice heard by sharing your lupus experience and what matters most to you when it comes to lupus drugs. By donating your time and input to this incredible project you will inform Food and Drug Administration (FDA) officials as they make decisions about future lupus treatments. Please join your fellow lupus activists from all across the nation and take action to help make a difference in the lives of those with lupus!
We need to get as many people with lupus as possible to complete the survey to gather input from a diverse patient population to inform the FDA and to also drive the content of the meeting. We believe the meeting provides FDA staff an excellent opportunity to hear patient viewpoints on lupus; including the symptoms and impacts to daily life that are most important to people with lupus, as well as their perspective on existing and future treatments. This will help inform the agency’s decisions during the drug development and review process.
Here’s the link to the website, which tells more about the PFDD. https://lupuspfdd.org/
Here is the direct survey link: https://lupuspfdd.org/participate/take-the-survey/
This is vital in helping to educate the FDA and to get new drugs for people with lupus.
Your input as a person with lupus is extremely valuable and important to the success of this project. Please do not miss out on this amazing and unique opportunity to be a powerful lupus activist and to help drive lupus drug development forward with your voice. We encourage every person with lupus to take action now by completing the survey even if you are unable to participate in the meeting. We greatly appreciate your time and efforts.
Please share this information…..post on Facebook and Twitter with the hashtag #lupuspfdd and let’s help make a difference by encouraging those living with lupus to complete the survey!!
START EACH DAY WITH A GRATEFUL HEART!
Please remember everyone’s body is different and unique. Always discuss any areas of concern about your autoimmune disease with your doctor.
Hugs to all…..You can do it!
Don’t be afraid of failure. If you never try, you will never succeed.