Patient Advocacy Strategies

04/02/2026

Cell and gene therapies are opening the door to potentially life-changing treatments, especially for rare diseases. But challenges like high costs, complex manufacturing, and patient access still need to be solved. With collaboration, new pricing models, and improved technology, the future of these therapies could make them more accessible and scalable for patients around the world. Learn more below

In an interview ahead of Advanced Therapies Week, Anna Catalanotto of Cardinal Health discussed growth in cell and gene therapies, highlighting that cross-sector collaboration is key to improving scalability, sustainability, and patient access.

03/25/2026

The wAIHA Warriors, a nonprofit advocacy group supporting individuals living with warm autoimmune hemolytic anemia (wAIHA), have a major reason to celebrate: nipocalimab, the first potential treatment for wAIHA, has been submitted to the FDA!

Through our early work with Momenta Pharmaceuticals, PAS collaborated with the wAIHA community to establish, launch, and grow the wAIHA Warriors, which supported a pivotal study that played a key role in the development of nipocalimab.

The wAIHA Warriors are a remarkable example of how a dedicated community can drive progress in the rare disease space, and we’re honored to have played a leading role in the genesis of this remarkable organization.

📷: PAS Founder & CEO Mike Walsh and wAIHA Warriors Executive Director, Karen A. Jones at the wAIHA Warriors inaugural meeting in 2023.

03/19/2026

Stories have the power to make health issues more real and relatable. By sharing personal experiences, storytelling helps build understanding, reduce stigma, and inspire action to improve health in our communities. Sometimes a story can reach people in ways statistics simply can’t. Learn more below

In health communication, scientific evidence and data are often used to convey important information and advice about behaviours that impact health.

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.