Global Genes Summit
Development Manager, Katie Jensen recently traveled to the Global Genes Rare Patient Advocacy Summit to learn from and collaborate with other rare disease leaders. Read about what she learned, who she met, and why she’s even more inspired for the Patient Benefit Conference & LAMposium LA!
Registration for the Patient Benefit Research Conference is officially open! The LAM Foundation staff is super excited about this conference, but we also realize the concept may still be unclear to many who might want to attend. I wanted to take a few minutes to help provide a better understanding of what it is and what you might learn by attending.
The obvious answer to this question is: a cure. A cure would negate every other complication caused by LAM. Indeed, finding a cure remains our number one priority at The LAM Foundation. However, in the intervening years, we know there are many questions and issues that, if solved or addressed constructively, might improve each patient’s quality of life as we endeavor to overcome the final barriers to a cure.
What would make life better for you now: hour to hour, day to day, month to month, clinic visit to clinic visit? The answers you provide to this question will set the agenda and priorities for the upcoming “Patient Benefit” Research Conference, to be held concurrently with LAMposium LA.