Ella Balasa

06/02/2026

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!

17/01/2026

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 💜

01/12/2025

13/10/2025

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!

11/09/2024

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/

29/05/2024

05/02/2024

Antibiotic resistance has been the greatest threat to my life since being a young child diagnosed with cystic fibrosis. So i’m excited to partner with on the Flip the Script Campaign to raise awareness of antimicrobial stewardship for the public to understand when antibiotics should and shouldn’t be prescribed! Antimicrobial resistance can occur when antibiotics are over prescribed.

🔗Check out the video at the link in my bio to learn more and understand what you can do!
❓Have you ever dealt with infections that required different antibiotics to treat it? Then you have also been impacted by

12/01/2024

👋It’s been a while that I have introduced myself on this page! My name is Ella Balasa and I have a rare and chronic lung disease called cystic fibrosis.
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🏥Over the years of many hospital stays, doctor appointments, surgeries, and sickness, I’ve learned the value of being a patient advocate for my own health and in facilitating the best care I can for myself. I believe in the importance of engaging patient communities to be active participants in healthcare by empowering and educating them to collaborate with researchers, physicians, and pharmaceutical companies. This is how we will improve disease outcomes.
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🧬I have a science background, combined with my patient experiences I contributing to clinical trial development, research committees, developing patient engagement initiatives, sharing my personal healthcare perspectives through speaking, writing, and sharing valuable content to companies and other patients.
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🫁I describe CF as my greatest blessing yet most awful curse, as although it limits my life tremendously, it has shaped me to be the person I am and has shaped my passion for using my lived experience to do my part in improving healthcare.
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➡️Follow me for more content on health education, patient experiences, and patient engagement opportunities.
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👉And visit the link in my bio where you can find opportunities that I share with my community updated with various speaking, advisory board, and survey opportunities that will help you get started in being involved in valuable patient input!

11/12/2023

🌟Do you want advice on how to grow your patient advocacy presence? 🌟Do you have questions about where to start and how others have amplified their voices and found opportunities?

Check out the live stream webinar. I was invited to share with the Our Odyssey community about my journey through advocacy to becoming a patient expert consultant.
Our Odyssey is a platform connecting young adults impacted by a rare or chronic condition with social and emotional support.

I was joined by the fantastic Taylor Kane , another patient advocacy and engagement consultant.

👉Visit the link in my bio under recent links to tune in! While you’re there, check out opportunities that I share with my community under the “opportunities” section. I update this with various speaking, advisory board, and survey opportunities that will help you get started in being involved in valuable patient input!

14/11/2023

📣Calling all fellow AMR patient survivors, advocates, and carers (all welcome):

During World Antimicrobial Resistance Awareness Week, join myself and fellow World Health Organization Taskforce members by tuning into this webinar on November 21st. You will hear personal perspectives of the power of advocacy in combatting antimicrobial resistance and the need for broader global awareness. Join us in amplifying more stakeholder voices and share with your community! AMR is a global threat that we must bring greater awareness to!

👉Register at the link in my bio!

03/11/2023

I am a EUPATI Patient Expert!

Attending the in person training event in Prague last week was an incredible experience. I decided to enroll in the Patient Expert Training to gain a better understanding of the capacity in which patients can and do collaborate in the European healthcare industry’s clinical and regulatory pathways.

I came away with much more than I could have expected. I didn’t think I would connect with and learn from so many incredible patient advocates, nonprofit leaders, and industry partners who had such expansive knowledge and impact in their disease states in their respective countries, not just in Europe but around the world. Bonds were created by the mutual passion for bringing patient voices and experiences into healthcare improvement and drug development.

The week of course had its challenges, as I had a partial lung collapse mid way through and had to find out what a Prague hospital ER was like. I have no complaints and I am fine now, thankfully.

As a EUPATI Patient Expert Fellow, I aim to continue my patient advocacy and engagement work to drive change in the healthcare and drug development ecosystems by facilitating and strategizing effective collaboration between patients and industry.

Thank you to all the trainers and EUPATI leaders for their work to make this training a success. And I look forward to new opportunities to ultimately improve patient experiences and health.
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02/10/2023

💻Join the Light Collective Townhall meeting on Oct 17th!

The Light Collective’s mission is to advance the collective rights, interests, and voices of patient communities in health tech. Striving for a world in which patients and patient communities participating in health technologies are safe from exploitation and harm, have the right to decide how our collective health information is used and shared!

I have had the privilege of learning so much about health information and data the last few months by being involved in the 2023 Cohort Training program.

Join us to learn more about what you can do to protect you and your communities data and rights.

👉Registration in the link in the bio and learn more at lightcollective.org
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