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

“My life has really been hindered for the past 10-15 years. I’m constantly in the hospital. I have been in and out of college for about 10 years, and I am unable to work. What I have now isn’t a life. I will do anything for a chance to live a normal life. Anything to make my life better.”

Danielle

Sickle cell disease patient

“As a passionate supporter of sickle cell research, education, and awareness, I am willing to work with anyone who is interested in the development of safe treatment options and, ultimately, finding a cure for all sickle cell warriors.”

Rogelle

Mother of six-year-old with sickle cell disease

“The biggest challenge for me has always been never knowing when an accident would happen, and I would end up with a break. Many times, a family outing was ruined by my breaking a bone. This leads to guilt and feeling like a burden. My family has always been good to me and been supportive.”

Blynda

Hypophosphatasia patient

“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.”

Watch the video

Carla

Patient advocate and Aruvant patient navigator

“I have sickle cell disease and it has been a life-altering struggle since my first acute chest syndrome before age five. 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

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: