September 25, 2017
College Park Marriott / Hyattsville, MD

Giving a voice to those with lupus

Your input makes a difference

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The Lupus and Allied Diseases Association, the Lupus Foundation of America and the Lupus Research Alliance have launched a ground-breaking initiative to improve and accelerate the development of new treatments for lupus. This very important effort is a tremendous opportunity for individuals with lupus to contribute to lupus drug development by sharing how lupus affects their daily lives and their thoughts on current and future lupus treatments.

Tell Your Lupus Story

The voice of people with lupus matters! Learn about the survey that we used to better understand what matters most to people with lupus and how the information collected in this survey will help advance treatments for lupus.

Learn About the Survey

Join Online

If you would like to participate in the Lupus PFDD Meeting but are unable to attend in person, you can join our live webcast.

Join Online

Tiffany Marie Peterson

I’ve watched courageous women lose their lives due to the inadequate amount of treatment options available; I’m overjoyed that people with lupus are finally being given the opportunity to share their personal healthcare experiences with the FDA to collaboratively impact and provide better treatment options in the near future.

Tiffany Marie Peterson
Lupus Patient Advocate

Carlene Harrison

As a person with lupus, participating in this project would mean the world to me, as it aligns with my mission to help bridge the gap between all stakeholders in the healthcare arena and improve patient care through advocacy that will help drive policy change.

Carlene Harrison
Lupus Patient Advocate

Patrick L.

As an individual recently diagnosed with lupus, this project offers me the opportunity to convey my disease-related challenges to FDA officials, which will hopefully advance our efforts in finding solutions and cures.

Patrick L.
Lupus Patient Advocate

Sandra Raymond

The Lupus Patient-Focused Drug Development Meeting is an incredible opportunity for people with lupus to change the way new treatments are discovered, tested and approved and to bring those treatments to patients as fast as possible. The lupus community has united to support this critical effort and we encourage all people with lupus to participate and share their story so that we can continue to make a difference in the fight against this cruel disease.

Sandra C. Raymond
Lupus Foundation of America President and CEO

Kenneth Farber

We are proud to collaborate with the lupus community nationwide to support the FDA’s commitment and urge everyone to answer the call for feedback with the patient survey as a first important step.

Kenneth M. Farber
President/CEO, Lupus Research Alliance

Allie Gutshall

Participating would mean that I have power and agency to make a difference in my life and that of others and that I am not a victim of lupus, but rather a co-crusader in finding better treatments and maybe even a cure.

Allie Gutshall
Lupus Patient Advocate

Madeline Cocchiarella

Lupus is a disease that often takes control away from those affected. The PFDD is an opportunity to take some of that control back and actively work towards better therapies for people with lupus.

Madeline Cocchiarella
Lupus Patient Advocate

Elizabeth SantaCruz

Through the Patient-Focused Drug Development (PFDD) meeting, the patients and caregivers are provided a platform to communicate the patient’s perspective on available/current treatments, share our stories, and provide an insight on treatments vs. symptoms. Bringing our patient and caregiver voice to drug/therapy development is a milestone, because it is a direct path to understanding and acknowledging how lupus affects people on a day-to-day basis and the urgency for better treatments.

Elizabeth SantaCruz
Mother of child with lupus

Lisabeth S. Iglesias

Contributing to this effort validates my lupus life experiences and empowers me, knowing I have made a difference in someone else’s life.

Lisabeth S. Iglesias
Lupus Patient Advocate

Kaamilah Gilyard

The PFDD project means that the FDA will be able to hear my voice and that will hopefully lead to patient-focused solutions to the quality of life problems that many of us face every day.

Kaamilah Gilyard
Lupus Patient Advocate

Kathleen A. Arntsen

We are thrilled to collaborate on this remarkable and long overdue initiative which will allow individuals struggling to live with this multifaceted, volatile, and life-altering autoimmune disease to finally be considered a priority and have the opportunity to be included and heard in the lupus drug development process.

Kathleen A. Arntsen
President & CEO, Lupus and Allied Diseases Association; diagnosed with lupus 35 years ago

Shanna Balcazar

I have been dealing with lupus for years. There are no medications to help me. Only one drug has been specifically made for lupus and I am unable to take it. Instead, I am taking medications to help with some of my symptoms, but these medications give me additional symptoms. I have to deal with the lesser of two evils, which makes my quality of life  severely lacking. I along with many other lupus patients need help. We need the FDA to give us hope for the future of developing new treatments for lupus.

Shanna Balcazar
Lupus Patient Advocate

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