A diagnosis is not defeat.

The strength and stories of patients and caregivers pushes us to work hard and keep our future selves on the hook. We learn by listening and have a deep appreciation for your journeys and the barriers you face. If you’ll have us, we’ll be the ones to stand with you. Your story, your vantage point—and your strength—are critical to winning the fight.

Watch patient stories

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Relationships start with trust.

Everyone wants to be seen and heard. Yet, members of hematologic patient communities often feel isolated by their conditions as they navigate the challenges and uncertainties that come with living with these diseases.

You are not invisible.

We believe in healthcare that’s empathetic and accessible to everyone. When we talk to members of the Black, Brown and Hispanic communities with sickle cell disease, for instance, they say how they struggle with more than just their symptoms, but also with being people of color in America today. We hear that loud and clear. And these experiences of racism, stigmas and inequalities must inform change and improve access to care. We see you. You inspire our work.

The same goes for caregivers.

Caregivers are on the frontlines learning and observing. You’re living this every day. So, to support you, we examine the effects these diseases have not just on the individual but on all aspects of his or her life. A person may be a patient, but, first and foremost, they are your daughter, son, sibling, spouse, friend, parent or parent figure. You’re not going to give up. Neither are we.

Bridging a significant care gap.

formabridge is intended to serve as a resource hub for the sickle cell community, with specific emphasis on transition from pediatric to adult care. Through collaboration with SCD patient advocacy groups across the U.S., formabridge offers educational, credible and actionable information to help navigate Medicaid, disability benefits and more.

Insights Council

In 2021, we launched the Forma Insights Council: An advisory council of patients, caregivers and providers living with, impacted by and working in sickle cell disease. Through quarterly meetings, the Insights Council aims to:

  • Guide our understanding of how to be a trusted partner to the sickle cell community,
  • Provide insight into the experiences and needs of individuals in the sickle cell community and
  • Integrate the community’s perspective into our existing and future activities.

 

Insights Council participants represent the geographic, racial, gender and generational diversity of the sickle cell community. We are honored to partner with them to center the community perspective in our work here at Forma.

Patient Experiences

Caregiver Experiences