Patients & Caregivers

Building true partnerships with patient communities is a cornerstone of our approach to every project and initiative. As the experts in the diseases we hope to treat, their input, needs, concerns, and collaboration are critical to our work.

Seeking first to understand

We build sincere and trusting relationships with patients by approaching them with humility, transparency and a clear desire to listen and to understand their experience of living with rare diseases.

Our commitment

in action

By investing in patient advocacy, creating patient advisory boards, and establishing patient support groups, we are developing communities and connective infrastructure that enable us to learn from and engage with patient voices.

Because we recognize that it takes a community to support people with rare diseases, we prioritize educational outreach to families and to physicians.

By actively seeking patient input into clinical trial design and the kinds of therapies needed, we ensure that patients are heard and that our efforts are designed to address the most significant challenges faced by people with rare diseases.

We strive to demonstrate our commitment to communicating with patient communities by being accessible, by responding in a timely manner, and by sharing information that is useful and easy to understand.



Agios is dedicated to partnering with patient communities to achieve our shared goals and to provide support beyond medical innovations. Through charitable donations to healthcare-related non-profit organizations, we support disease awareness and education, patient and family support services and community-building programs.

We also consider sponsorship requests, which are opportunities for an advocacy group to receive funding or in-kind support in return for a tangible benefit to Agios such as the opportunity to make a presentation or distribute materials.

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Patient Resources

We know that reliable information can be hard to come by. We can help. Check out our list of vetted Agios and third-party resources for patients and caregivers.

Explore Resources

Cassandra Trimnell,

living with sickle cell disease

Agios is raising the bar by way of collaboration and partnership with the sickle cell community. As an advocate and an individual living with sickle cell disease, it’s great to finally feel included and be heard by a drug company.