Patient Advocacy Strategies

08/13/2026

What seems like a small misunderstanding can have a lasting impact.

In this personal story, Devin Argall shares how being repeatedly misidentified because of his voice affects his daily life as a person living with Duchenne muscular dystrophy and why respect, understanding, and inclusion matter.

Read his story. https://patientadvocacystrategies.com/blog/patient-advocacy-and-engagement/patient-advocacy/my-voice-matters-living-with-duchenne-muscular-dystrophy/?utm_source=linkedin_post&utm_medium=social_media&utm_campaign=advocacy_solutions

Devin Argall shares his experience living with Duchenne muscular dystrophy and how small assumptions can impact identity, inclusion, and respect.

08/07/2026

Clinical trials do not succeed on scientific promise alone.

They also have to work for the patients and families being asked to participate.

That means materials need to be clear. Barriers need to be understood. Recruitment needs to reflect lived experience. Retention needs to be planned early. And study teams need to see the trial through the eyes of the people it depends on.

Clinical trial readiness is about identifying the friction before it becomes a problem.

Because better planning creates better patient experiences — and stronger studies.

Read the full article: https://patientadvocacystrategies.com/blog/clinical-research/clinical-trial-recruitment/patient-centered-clinical-trial-design-building-trials-that-thrive/?utm_source=linkedin_post&utm_medium=social_media&utm_campaign=readiness_audit

Key Takeaways Clinical trials often face challenges due to patient participation issues rather than scientific inadequacies. Patient-centered clinical

07/17/2026

For audiobook fans, is now available in that format on Audible and Apple Books!

Narrated by the talented Tami Romani - so grateful for her friendship!

What a perfect way to celebrate Tori's birthday month!

https://amzn.to/4wcrNjN

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/