Ella Balasa

08/03/2026

A few months ago I was kicked off a cruise ship because of illness from my genetic disease, cystic fibrosis. Imagine going on a cruise to the sunny Caribbean, only to be told by the doctor on board that you were barred from the ship and finishing your vacation. That is exactly what happened to me after seeking assistance from a cruise doctor whose lack of knowledge of CF led to very unfortunate outcomes. In this Cystic Fibrosis Research Inst. podcast I detail my story of seeking routine care while feeling unwell and utilizing self-advocacy in the face of adversity to make sure my needs were met before and after travels.

Watch the full episode on CFRI’s Youtube Channel: Designated a Liability: Cruising With Cystic Fibrosis — Ella Balasa

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/do...

Your thoughts are valuable and will help with future podcast planning! Respond to this short survey https://www.surveymonkey.com/r/56NJC95, and you’ll be entered in a quarterly drawing for a $25 Etsy gift card.

05/20/2026

Honored to have participated in the International Conference as a patient representative, sharing my lived experience and perspective alongside clinicians, researchers, and industry leaders.

Patient voices are essential in shaping research, care, and innovation — not only as stories, but as expertise that can help drive more meaningful outcomes for the communities we serve.

Grateful for the opportunity to contribute to these important conversations and advocate for continued partnership between patients and the broader healthcare community.

05/05/2026

I often get asked how I started my patient advocacy journey...

Battling CF made me realize I want to be a voice not just for my own care, but for my community as well.

Thank you to for featuring my journey on their Voices of Rare Disease Perspectives. Watch the full interview here: https://lumanity.com/perspectives/voices-of-rare-disease-perspectives-across-the-community/

👉 Follow me for more health, advocacy, and life content. And find more about consulting and health experiences on my website: www.ellabalasa.com

❓How did you find your way into patient advocacy? Comment below.

04/01/2026

My story is featured in a campaign on antimicrobial resistance (AMR).

AMR is a growing threat where infections become harder — and sometimes impossible — to treat. It’s not abstract. It’s real, and it can happen to anyone.

If sharing my experience does anything, I hope it makes this issue feel more personal… and more urgent.

I’ve added the CDC social media toolkit to my bio — please take a moment to check it out the full video and share. Your voice can help raise awareness and protect the future of infection treatment.

The more people understand what’s at stake, the better chance we have to prevent life-threatening, untreatable infections.

02/06/2026

In the last 2 weeks I had the opportunity to attend three events that allow me to share the patient journey, inspire the research and drug development community, and align with my missions of championing the patient experience and perspective to create better healthcare outcomes in both clinical care and in clinical research.

First up, I spoke on a panel at the annual meeting about my CF diagnosis journey and the need for prenatal and carrier screenings to support early treatment and care for patients and families diagnosed with genetic diseases. It’s a pleasure to work with such a motivated group of individuals who understand this need and work to develop technologies and spread education to providers on genetic testing.

Next, I gave the patient keynote at the IDSA and the American Society for Microbiology Interdisciplinary Meeting on Antimicrobial Resistance and Innovation (IMARI) Conference in Vegas, sharing about my health experiences dealing with antimicrobial resistant infections and the needs for the development of novel therapeutics and patient collaboration with both industry and healthcare professionals to humanize the patient experience and spur innovation and improve health outcomes.

Lastly, I attended where I had the pleasure of connecting with colleagues old and new and having meaningful discussions on opportunities to leverage patient insights to improve products and trials to optimize patient experiences. I was one of a few patient representatives at this meeting.

The central theme of empowering patients in being collaborators and partners in developing better experiences and outcomes resonated in all conversations.

Ready for the opportunities this spring will bring!

01/17/2026

Thank you for allowing me the honor of taking the stage and sharing my journey. 🫁 is an incredible organization committed to improving the lives of people with CF globally. I am tremendously grateful for their tireless efforts and for the many individuals that make their mission possible.
What an honor it was to speak at the gala 💜

12/01/2025

10/13/2025

In the last 2 weeks I had the opportunity to attend three conferences across two continents all of which inspired me in many ways to continue my missions of championing the patient experience and perspective to create better healthcare outcomes in both clinical care and in clinical research.

First up, at the Facilitate Live Patient Empowerment World Congress in London. The central theme of empowering patients in being collaborators and partners in developing better experiences and outcomes resonated in all conversations.

Next, I spoke at the International Consortium for Health Outcomes Measurement (ICHOM) Conference in Dublin, sharing about my experiences in collaborating with both industry and healthcare professionals to co-develop initiatives to measure patient experiences and outcomes that matter to communities. Thank you to ICHOM for inviting so many patient voices to this meeting.

Lastly, I joined the Patient Experience Symposium in Boston with invitation from the best conference chair person. Engaging in meaningful roundtable discussions and dinners learning about hospital systems implementing broad scale quality improvement initiatives and measures to improve patients outcomes and experiences was wonderful to learn about. Lastly, learning about the mission of and its founders personal journey was moving beyond words.
An energizing few weeks and ready for the upcoming meetings and engagements this fall to continue this work!

09/11/2024

It’s not too late to register for the For Patients By Patients conference where I will be talking about the ways that I engage as a patient partner with companies in the healthcare and pharma space. Tune in tomorrow 9/12 at 9:30pm ET to learn about how I came to be a patient advocate and engagement consultant and tips I have for others who want to do the same!

🗣️The PxP conference is entirely led by a team of experienced patient and public partners. This free, virtual event aims to bring you a wealth of knowledge, skills and resources on Patient Engagement in health research.

👉 Find the link to register in my bio or visit https://pxphub.org/event/

05/29/2024