Rare Disease Patient Communities
We work tirelessly not just for patient communities but with patient communities.
Patients and their loved ones are at the heart of the work we do every day. In listening to the rare disease patient community, we heard the need for our team to move with urgency. We commit to incorporating patient community perspectives into every step of the drug development process, every decision we make, and every action we take to ensure we truly understand the full scope of what patients and their support networks are waiting for – and where we can help.
Learn about the rare diseases whose communities we are supporting and collaborating with to design meaningful clinical trials, effective therapies and tools tailored to each patient community’s unique needs and goals.
We hear and integrate patient voices into our work.
We believe that the extraordinary voices of patients empower extraordinary science and medicine. Our longstanding relationships with rare disease patient communities guide us, and their resilience motivates us.
Meet Andrew – a young adult living with hereditary angioedema (HAE). While we’ve known him since he was a child, Andrew continues to energize and inform our work today. He was born in 2002 and was diagnosed with HAE type 2 at the age of five.
Andrew graduated from Forestview High School in Gaston, NC in June 2020 and is now attending Appalachian State University where he majors in education. While managing his HAE is an important part of his life, Andrew is thankful that he is able to take part in the everyday activities he enjoys.
We value and support the tireless work of patient advocates and organizations.
We build genuine, enduring relationships based on trust and transparency with local, regional and global patient advocacy, including those focused on HAE, rare hematological, kidney and bone conditions and the broader rare disease community. Through collaboration and listening, we meet patient communities where they are and foster empowerment through educational awareness and support initiatives.
Meet some of the extraordinary patient advocacy organizations we are fortunate enough to work fast with:
Rare Disease Patient Communities
We work tirelessly not just for patient communities but with patient communities.
Patients and their loved ones are at the heart of the work we do every day. In listening to the rare disease patient community, we heard the need for our team to move with urgency. We commit to incorporating patient community perspectives into every step of the drug development process, every decision we make, and every action we take to ensure we truly understand the full scope of what patients and their support networks are waiting for – and where we can help.
Learn about the rare diseases whose communities we are supporting and collaborating with to design meaningful clinical trials, effective therapies and tools tailored to each patient community’s unique needs and goals.
We hear and integrate patient voices into our work.
We believe that the extraordinary voices of patients empower extraordinary science and medicine. Our longstanding relationships with rare disease patient communities guide us, and their resilience motivates us.
Meet Andrew – a young adult living with hereditary angioedema (HAE). While we’ve known him since he was a child, Andrew continues to energize and inform our work today. He was born in 2002 and was diagnosed with HAE type 2 at the age of five.
Andrew graduated from Forestview High School in Gaston, NC in June 2020 and is now attending Appalachian State University where he majors in education. While managing his HAE is an important part of his life, Andrew is thankful that he is able to take part in the everyday activities he enjoys.
We value and support the tireless work of patient advocates and organizations.
We build genuine, enduring relationships based on trust and transparency with local, regional and global patient advocacy, including those focused on HAE, rare hematological, kidney and bone conditions and the broader rare disease community. Through collaboration and listening, we meet patient communities where they are and foster empowerment through educational awareness and support initiatives.
Meet some of the extraordinary patient advocacy organizations we are fortunate enough to work fast with:
Patient advocacy organizations interested in receiving a sponsorship or charitable grant from BioCryst can learn more and submit a request below.
- We listen to and integrate patient communities needs and insights, to ensure they are at the core of all we do
- We cultivate enduring partnerships and collaborations through trust and transparency while valuing the autonomy of the patient organizations
- We provide support to patient organizations to advance shared goals, improve patient outcomes, increase disease awareness, and cultivate patient-focused policies
- We value patient communities and organizations while adhering to all rules governing patient privacy and compliant collaborations
- We advocate for access to resources and all approved treatment options
- We understand that partnering with or providing financial support to patient communities is not contingent on a promotion or endorsement of a specific medicine or treatment
At BioCryst, every employee is motivated to meet the needs of rare disease patient communities.
At BioCryst, every employee is motivated to meet the needs of rare disease patient communities.
It gives me a sense of urgency to play a pivotal role in relieving patients and their families of unnecessary burdens when treating their Rare Diseases.
Eric Perry
Director, US Market Access
As I learned in my training to be a pharmacist, listening to the patient community and understanding their needs is the single most important contribution I can make. Being able to hear from the community and bring that voice into the process of developing new therapies is a humbling responsibility, and one that absolutely makes it a joy to come to work.
Alex Sherman
Director, Global Market Insights & Analytics
Our goal is to gain the respect and trust of rare disease patients around the world. We will do that by listening intently and ultimately bringing oral therapies to them because these medicines have the potential to change their lives.
Jon Stonehouse
CEO
Have questions about our focus on rare disease patient communities or how we work with patient advocates? Please contact PatientAdvocacy@biocryst.com.