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Tag: pfdd

Patient Involvement: The Next Critical Step

October, 2018 Certainly, advocacy is absolutely necessary to generate funding for the National Institutes of Health (NIH) and other federal organizations, as well as for groups that support and conduct lupus research. But patient involvement is also critical to opening pathways to discovery. “Just helping to raise money isn’t enough,” said Diane Gross, National Director of […] Read More

2017: A Year of Great Triumph for Lupus

Nov. 28, 2017. Thanks to you, the Lupus Research Alliance continues to make game-changing gains in advancing the basic understanding of lupus … while giving hope to millions of people that a potential cure is within reach. We Invested in Innovative Research The Lupus Research Alliance gave 19 scientists the means to bring their ideas […] Read More

Lupus: Patient Voices Report Released Today

March 7, 2018 Lupus: Patient Voices Report Released Today We are pleased to announce the release of Lupus: Patient Voices, a comprehensive report based on input from the Externally-led Lupus Patient-Focused Drug Development (PFDD) Meeting and pre-meeting survey conducted last fall. This report includes data and personal accounts from people with lupus on symptoms, daily […] Read More

The Patients’ Voice Heard at LUPUS 2019

April 11, 2019 The Lupus Research Alliance is pleased to report on an inspirational talk our fellow colleague and good friend Kathleen Arntsen, President & CEO of Lupus and Allied Diseases Association, Inc. (LADA) gave at the recent 13th International Congress on Systemic Lupus Erythematosus. Called LUPUS 2019, the meeting was an opportunity for researchers, […] Read More

Lupus Patient-Focused Drug Development Meeting

The Lupus Research Alliance collaborated with the Lupus and Allied Diseases Association and the Lupus Foundation of America on a groundbreaking initiative in cooperation with the Food and Drug Administration’s (FDA) externally-led Patient-Focused Drug Development (PFDD) program. The well-attended meeting hosted by the three groups supplemented by a national survey of people with lupus resulted […] Read More