Advocating for Women in Rare Diseases: LAM Foundation’s Call to the FDA Innovation Hub
The LAM Foundation recently issued recommendations for the FDA’s Rare Disease Innovation Hub, urging it to prioritize the unique needs of women affected by rare diseases like lymphangioleiomyomatosis (LAM). In our letter, we emphasized:
- Women’s Health Focus: Diseases like LAM, primarily affecting women, face critical funding and research gaps. Prioritizing women’s health within the Innovation Hub could close these disparities and drive meaningful progress.
- Patient-Centered Research: Including patients in research design creates treatments that truly reflect their lived experiences. This is especially vital for rare disease patients, who know their conditions best.
- Accelerated Approvals & Adaptive Trials: Speed and flexibility in clinical trials and drug approval are essential for rare disease patients, many of whom face delayed diagnoses and limited options.
The LAM Foundation is dedicated to championing the unique needs of women with LAM and supporting the success of the FDA’s Rare Disease Innovation Hub. We look forward to continued collaboration to keep women’s health in rare diseases at the heart of this important initiative.
Read our full letter with detailed recommendations.