Patient Advocacy Strategies

We couldn’t be more proud of our Director of Advocacy, Lesa Brackbill, M.A., for the upcoming release of her book, A Brighter Blueprint, The Twelve Threads of Effective Advocacy. Learn more and pre-order the book today: lnkd.in/eAV6m658

Read our insider interview with Lesa Brackbill, Director of Advocacy at Patient Advocacy Strategies, as she shares her unexpected career path, the unique opportunities for women in rare disease advocacy, and the significant barriers like the expectation of unpaid labour. rarerevolutionmagazine.com/rare-insider/l… #RareDisease #Advocacy #WomenInRARE #PatientAdvocacy

“Living in the rare disease community is a mix of beauty and pain. We grieve what is and what could have been—but many of us are driven to create a lasting impact for our loved ones.” Lesa Brackbill shares her daughter Tori’s story this #RareDiseaseDay: patientadvocacystrategies.com/blog/uncategor…

“Insurance companies need to understand that independence—especially in the bathroom—is essential to our dignity and daily lives.” This #RareDiseaseMonth, we are amplifying voices from the rare community, including PAS's own Devin Argall. Learn more: tinyurl.com/2xynw44k

Our new incognito article asks: Why fund rare disease cures you won't pay for? Discover the broken end-to-end funding and access pathway that denies families hope and approved treatments, despite public investment in research. rarerevolutionmagazine.com/rare-insider/i… #HealthAccess #DrugPricing #HTA #RareDisease

America’s biopharma leadership fuels jobs, cures and economic growth. It matters. Harmful policies put us at risk of losing this competitive edge while China races to overtake us by investing heavily in biopharmaceutical R&D. Policymakers must continue to invest in smart policies to keep America in the lead. americacures.com

This #RareDiseaseMonth, we applaud @casiomac, a rare disease dad fighting for his daughter, Rose, and children everywhere living with rare diagnoses. Casey isn’t afraid to call out preventable, systemic issues that stand in the way of lifesaving progress for rare kids.

Uplifting orgs advancing health equity in #raredisease is essential, & we’re honored to spotlight the @rarediseasediv1As. The RDDC shares its mission is to “eliminate health disparities for diverse rare disease patients." Learn more about the RDDC: rarediseasediversity.org

‼️Breaking News: Rare Pediatric Disease PRV Program Reauthorized by Congress! After a two-year campaign to reauthorize the Rare Pediatric Disease Priority Review Voucher (PRV) Program, the rare disease community’s relentless advocacy has paid off. Congress has passed the Labor, HHS, and Related Agencies Appropriations bill, effectively reauthorizing the PRV Program for five years while also funding a number of other critical healthcare agencies. We applaud the reauthorization of the PRV Program and renewed investments in critical health research and public health programs. Thank you to the congressional champions who have partnered with our rare disease community to secure these advances. While significant work remains to enable all those living with rare diseases to thrive, today’s progress will accelerate innovation, expand access to life-changing therapies, and offer renewed hope to children and families whose futures once seemed beyond reach. To learn more about the full healthcare package, please visit our website: everylifefoundation.org/congress-passe…

This #RareDiseaseMonth, we’re leading by example. Rather than speaking for the rare disease community, we’re committed to amplifying their voices and critical perspectives, including insights from rare parent and @ChiesiGroup's Andres Trevino.

Matt, who lives with idiopathic pulmonary fibrosis (IPF), shares a challenging reality of living with the condition. #IPF #ClinicalTrial #IdiopathicPulmonaryFibrosis

Great update on a recent #newbornscreening milestone by @PatientAdvStrat's Lesa Brackbill patientadvocacystrategies.com/blog/news/mld-…

Member Spotlight: Patient Advocacy Strategies - MassBio massbio.org/news/recent-ne…

Patient Advocacy Strategies partners with biotechnology companies at every stage of development to help them meaningfully engage with patients and accelerate progress. Learn more about this #MassBioMember: massbio.org/news/recent-ne… @PatientAdvStrat

“If we don’t have people who participate in clinical trials, we can’t measure the outcome of a medication properly. Therefore, that drug will die on the vine.” Roy, who lives with #IPF, shares his perspective on clinical trial participation. youtu.be/ztqmdIUabp4

Newborn Screening Awareness Month is here, but it's time to shift our focus from awareness to action, and to take the time to listen to state Newborn Screening programs so we know what they need. patientadvocacystrategies.com/blog/rare-dise…