How TBX4Life Is Fueling a Global Collaboration LaRae Hacker never set out to become a rare disease advocate—but when her daughter’s TBX4 diagnosis left her feeling helpless, she found power in connection. Discover how TBX4Life [https://tbx4.org/] became her anchor in uncertainty and why she believes parent-led advocacy is the key to progress in rare disease research. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials [http://www.phaware.global/clinicaltrials]. Follow us on social @phaware Engage for a cure: www.phaware.global/donate [https://www.phaware.global/donate] #phaware Share your story: info@phaware.com [info@phaware.com#phawareMD] @TBX4_Life [https://x.com/TBX4_Life]

Episode 544 - LaRae Hacker

I'm Aware That I'm Rare: the phaware® podcast is devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because early diagnosis and treatment can mean the difference between life and death. Topics range from the importance of early diagnosis and global PH awareness, to the impact of clinical trials to how patient support and advocacy are paramount to battling this disease. Learn more about PH at www.phaware.global