Patient Advocacy Strategies

03/17/2026

The system ignores noise. It listens to architecture.

For too long, advocates have been told that a megaphone is their only tool. But being loud enough to be heard isn’t the same as being clear enough to be helpful. True systemic advocacy is architectural. It recognizes that the system moves for the most prepared, not the loudest.

It’s time to move past the megaphone and into strategy.

March 27: A Brighter Blueprint launches.

Fall 2026: The Brighter Blueprint Studio opens.

Preorder the book and join the Studio waitlist: http://brighterblueprint.patientadvocacystrategies.com

03/11/2026

We couldn’t be more proud of our Director of Advocacy, Lesa Brackbill, Author, for the upcoming release of her book, A Brighter Blueprint, The Twelve Threads of Effective Advocacy.

In this guide, Lesa speaks to the power of something seemingly simple – color – and shares how it can be used to weave a lasting legacy, like the landmark Newborn Screening legislation she spent 2,292 days fighting to pass in Pennsylvania in honor of her daughter, Tori.

Learn more and pre-order the book today: https://brighterblueprint.patientadvocacystrategies.com/

03/10/2026

"This is just how it is" is not a fact; it is a failure of architecture. The system isn’t a monster to be fought; it is a complex weave to be re-engineered.

Most people see the wall of the status quo. We see the Loom. When you stop fighting the wall and start studying the loom, you stop being an outsider making demands and start being an architect of the solution.

Don't fall in love with the plan; fall in love with the outcome.

Preorder A Brighter Blueprint: http://brighterblueprint.patientadvocacystrategies.com

03/05/2026

We need therapies… STAT!

Millions of Americans live with rare diseases, yet most still have no FDA-approved treatments. The STAT Act would help speed up access to life-saving therapies by improving how rare disease drugs are developed and reviewed.

Learn more about why these matters and how the EveryLife Foundation for Rare Diseases is pushing for change

https://everylifefoundation.org/stat-act/about-the-stat-act/

03/03/2026

The strongest safety nets aren’t built for the people in the room today; they are engineered for the families who will arrive tomorrow.

In advocacy, the Gold Thread of equity is our quality control. If the law we pass only helps those with resources, our safety net has a hole in it.

We aren’t just sharing a story; we are building a guardrail to protect people we may never meet.

A Brighter Blueprint launches March 27, 2026.

Move from a momument to a legacy.

🔗 Pre-order the book at http://brighterblueprint.patientadvocacystrategies.com

02/26/2026

“Being in the rare disease community is a delicate balance of beauty and pain. Every one of us is on a journey that no one would have chosen. We are all grieving in our own way—grieving the present and the future, mourning what could have been.

Many of us feel compelled to make a positive impact in the world due to everything we've endured; I certainly do. There's a deep desire to create a legacy for our child or loved one since they cannot do it for themselves.”

In recognition of this weekend, Patient Advocacy Strategies’ Director of Advocacy, Lesa Brackbill, shares her daughter Tori’s story, and previews some of the lessons she’s learned while advocating for expanded Newborn Screening from her upcoming book, “A Brighter Blueprint: The Twelve Threads of Effective Advocacy.

Learn more: https://patientadvocacystrategies.com/blog/uncategorized/rare-disease-day-and-advocating-for-newborn-screening/

02/24/2026

In the world of patient advocacy, we are often told that passion is our most powerful tool. We are told that if we are loud enough, the system will eventually move.

That is not always reality.

Passion starts the engine, but a disciplined process reaches the finish line.

After a decade of decoding the mechanics of systemic change, we are releasing the technical manual for those who don't have time to wait.

A Brighter Blueprint: The Twelve Threads of Effective Advocacy is more than a book; it is a structural guide for the work ahead. Created by our Director of Advocacy, Lesa Brackbill, it takes her 2,292-day journey to pass landmark legislation into a repeatable methodology for any mission.

📅 March 27, 2026: A Brighter Blueprint officially launches. This date marks the tenth anniversary of Lesa's daughter Tori’s passing—the catalyst for the architecture we build today.

📅 Fall 2026: The Brighter Blueprint Studio opens for advocates ready to move from the megaphone to the blueprint.

The system wasn't built for rare disease. We are.
It’s time to stop fighting the wall and start studying the loom.

🔗 Pre-order the book and join the movement: BrighterBlueprint.PatientAdvocacyStrategies.com

02/23/2026

“Insurance companies need to understand that independence—especially in the bathroom—is essential to our dignity and daily lives. Access to the right equipment shouldn’t be a battle.”

This , we are amplifying voices from the rare community, including PAS's own Devin Argall.

Devin, who lives with Duchenne Muscular Dystrophy, calls out the insurance barriers that limit independence for the rare community and emphasizes the critical importance of autonomy.

Rare disease advocate Devin Argall discusses the importance of independence while living with Duchenne Muscular Dystrophy.

02/19/2026

Big vaccine breakthroughs are on the horizon in 2026!

Experts are spotlighting major advances from expanding mRNA technology beyond COVID to new ways to protect infants, tackle enteric diseases, and accelerate HIV vaccine research. We are also seeing innovations in delivery, stronger global production capacity, and smarter clinical trials powered by AI. These could transform global health and help protect the most vulnerable.

Read more below

From mRNA to HIV, we asked five vaccine leaders to share the advances they believe will shape global health in 2026.

02/16/2026

Casey McPherson, a rare disease advocate fighting for his daughter, Rose, and for children everywhere living with rare diagnoses, isn’t afraid to call out preventable, systemic issues that stand in the way of lifesaving progress for rare kids.

We applaud Casey—founder of AlphaRose Therapeutics and the To Cure A Rose Foundation—for speaking up and calling out a broken system. As he powerfully stated, “People are dying, and you’re worried about publishing?”

As a rare disease advocate, what would you like biopharma and life science companies to improve upon?

02/09/2026

Too often in the rare disease space, marginalized communities are overlooked—deepening disparities within an already underserved population.

Centering and uplifting the voices and organizations advancing health equity in rare disease is essential. We’re honored to spotlight the Rare Disease Diversity Coalition

As the RDDC shares, their mission is to “eliminate health disparities for diverse rare disease patients by developing and deploying an evidence-based suite of advocacy tools and research interventions that deliver tangible solutions. Through these efforts, we strive to improve the lives and health outcomes of diverse rare disease patients around the world.”

Learn more about RDDC here: https://www.rarediseasediversity.org/

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Rare Disease Diversity Coalition (RDDC) where more than 30 million Americans— nearly 1 in 10—have a rare disease.

02/04/2026

This , we’re leading by example.

Too often, members of the rare disease community are forced to fight for their voices to be heard—in clinical trials, classrooms, and even within their own healthcare journeys.

Rather than speaking for the rare disease community, we’re committed to amplifying their voices and critical perspectives, including insights from rare parent Andres Trevino.

If you’re a member of the rare disease community, we invite you to share your unique perspective in the comments to help further awareness, understanding, and meaningful change.