Throughout my 25 years working in the health care industry, patient engagement has been at the core of every role I’ve undertaken. I strongly believe that the combination of transformational science with an in-depth understanding of the lived experiences of patients is what shapes our ability to make a real difference to their lives.
Our commitment
An uncompromising commitment to patients is one of our core values at Vertex — uniting our teams with a common purpose and enabling us to achieve our goal to deliver innovative solutions for people living with serious diseases. By establishing meaningful relationships and partnering with patient communities, championing the patient voice inside and outside of our organization, we place patients at the center of everything we do.
To create innovative treatments, I passionately believe that you must bring the voice of those living with the diseases into every stage of the medicine development process. Our patient and community engagement teams do this around the world, listening to and understanding the lived experiences of patients, families and caregivers, bridging the gap between their needs and our scientists in the lab.
Our approach is to ensure that patients and communities are integral to our work. They are collaborators who bring invaluable insights and experiences that shape everything we do — from bench to bedside. At Vertex, we’ve been researching and developing our cystic fibrosis (CF) medicines for more than 20 years, and the CF community has been with us every step of the way. This relationship has deepened our understanding of CF and how it impacts the community’s lives, informing how we design clinical trials and develop potentially transformative solutions that reflect patients’ lived experiences.
Working with sickle cell disease (SCD) and transfusion-dependent beta thalassemia (TDT) communities, we have launched a series of disease awareness campaigns in countries across Europe, created for patients, with patients, to discuss their disease and how they can live their lives to the fullest. These were created to answer the specific needs of the SCD and TDT patient communities, and to complement campaigns that already existed. Through discussions and advisory boards with patient groups, we developed the messages for these campaigns to ensure they accurately represent the experience of living with these diseases. Working with groups such as the Thalassaemia International Federation and European Sickle Cell Federation to gather testimonies and photos from real patients, we made sure to truly reflect these communities. Throughout the development of these campaigns and beyond, we consulted with patient groups at every stage, ensuring to center patients’ perspectives in everything we do.
Working in partnership
We engage with patient organizations to help them in their vital work of encouraging greater understanding, representation and advocacy for patients. Supporting these groups in raising awareness, championing community needs, and emphasizing the challenges they face strengthens our shared commitment and deepens the trust in our relationship.
Each year we support Collectif Drépanocytose in Belgium on their “Festival Drépanocyt’Ose,” uniting patients, families, physicians and the general public to raise awareness of SCD and TDT, and the experience of living with these diseases. We also support patient organizations in their drive to improve patients’ knowledge of their disease, such as supporting FMDT-SOS Globi in France to organize patient education webinars.
At the 2024 European Hematology Association Congress we recognized the need to center patient perspectives. Our goal was to emphasize our belief that for us, patients always have a seat at the table. Inspired by the patient-centric feel we instill in all of our offices, we transformed part of our booth into a space where patient advocates could connect and have valuable conversations. Using quotes and imagery from patients across the globe to visualize personal experiences and raise awareness of the daily realities of these conditions, we collaborated with patient groups to ensure these resonated with their lived experiences of the conditions.
In 2024 alone, we supported dozens of awareness events and held patient panels, supporting organizations like Vaincre la Mucoviscidose in France for their Move for Muko fundraising event, Mukoviszidose e.V. in Germany on the MukoMove sports challenge, and the Polish Cystic Fibrosis Association for their Run for Breath activity. These events aren’t just about raising awareness — they’re also celebrations of solidarity and progress, and at Vertex we’re proud to support them each year.
Looking ahead
Every day I’m inspired by the strength and determination of people living with serious diseases around the world and the families and caregivers who fuel our relentless drive to deliver transformative medicines. By working with patient communities, we honor their resilience and better understand the challenges they face, enabling us to work toward solutions that truly reflect their experiences. At Vertex, listening, learning and co-creating solutions with patients ensures that their needs and aspirations shape the decisions we make. It’s through this collaborative approach that I believe we can continue to drive progress together, ensuring that no patient is left behind.
But our work doesn’t stop there. We know there is still more we can do to address unmet needs and continue developing potentially transformative therapies, to deliver on our uncompromising commitment to patients.