Patients & Advocacy

Our work centers around patients.

Historically, the research community has not developed medicines quickly enough to meet the needs of sickle cell disease patients. We are excited for Aruvant to be part of a future for patients with sickle cell disease that includes more treatment options and potential cures. We are committed to bringing transformative, cutting-edge treatment options to the sickle cell community. and others impacted by rare diseases.

The best way for us to succeed in developing these breakthrough treatments is by truly understanding the needs and desires of patients and their family members. We believe in our science, but science cannot improve lives without the trust of patients. Therefore, we are committed to forging important and unique collaborations with the sickle cell and rare disease community. It is through these collaborations that we become part of the community and can do better by patients and their families.

In this section of our website, you can find stories of the people who are our inspiration, the groups we partner with, resources where patients can find additional information and an overview of our clinical trial.

To learn more about our patient advocacy efforts, contact us at advocacy@aruvant.com.

Patients & Advocacy

Our Inspiration

“I have sickle cell disease and it has been a life altering struggle since my first acute chest syndrome before age 5. Using my art, I hope to one day use my rare and unique interpretation of life modified by my experiences and values to convey knowledge, values and perspectives that transcend generations for eons.”

– Aeon, sickle cell warrior and artist

“Sickle Cell is not something I would wish on anyone. It is not for the faint of heart. It is difficult because of the stress that it brings about, the uncertainty, the life expectancy. I personally want to continue to see sickle cell treatments advanced so that the younger generation can have a better perspective of life than I’m living today.”

–Carla, patient advocate and Aruvant patient navigator

“Nobody is holding you back but you. Do it for yourself. Do it for the babies that don’t have a voice yet. So make history.” 

-Kiyah during TOVA Community Health with Dr. Nina Anderson webinar on participating in gene therapy clinical trials.

Draft cover for Aeon’s series on sickle cell disease.

Patients & Advocacy

Resources

Below are organizations that offer resources and information for patients, families, and caregivers interested in learning more about rare diseases, genetic disorders and sickle cell disease.  

Partners

We partner with organizations to help bring awareness to sickle cell disease and other rare diseases to help us continue to keep the needs of the patients at the forefront of what we do. We are currently working with the following groups: