Date
Time
Speakers: Maria Santaella, PhD(c), MSN, RN-BC, CPHON; Michael Recht, MD, PhD, MBA; Sammie Valadez
Discover how the National Research Blueprint (NRB) has evolved into the Bleeding Disorders Research Collaborative (BDRC). This session will highlight the current phase of implementation, the role of lived experience experts, and collaborative strategies that are shaping the future of bleeding disorders research.
Summary of the Webinar
The National Bleeding Disorders Foundation (NBDF) Research team held a presentation about how we're working to improve research for people with bleeding disorders. We want to make sure that research truly helps the people who need it most.
Our Vision for Research
We imagine a world where:
- People with bleeding disorders help shape all research priorities
- Research questions come from real-life experiences
- There's strong trust between researchers and the community
- Research truly reflects what people need to live their best lives
What Are "Lived Experience Experts"?
These are people with bleeding disorders, their caregivers, and family members who have firsthand knowledge of what it's like to live with a bleeding disorder. We call them "LEEs" for short. Their personal experiences give them unique insights that can help improve research and care for everyone.
A Personal Journey: Sammie Valadez -From Participant to Leader
One community member shared her inspiring journey with the Bleeding Disorders Research Collaborative (BDRC). She started in the SOS (State of the Science) program, which was the beginning of what is now called the BDRC. Through this process, she was able to grow from a participant to becoming a co-chair and was honored as the first lived experience expert of the year in 2024. Her story shows that you don't need medical or research training to make a difference. She joined simply as a lived experience expert and a mom, proving that if her voice could be heard, anyone's voice can be heard. She helped create the definition of what a lived experience expert is and became a champion for health equity and diversity.
How We're Making Research More Collaborative
Bleeding Disorders Research Collaborative (BDRC): Represents a groundbreaking approach to research that fundamentally transforms how people with bleeding disorders participate in the research process. Rather than being passive subjects, community members become active partners and leaders in research design and implementation.
The BDRC operates on core values of mutual respect, accountability, transparency, and genuine collaboration. What makes this unique is that lived experience experts (LEEs) play key roles at every single step, from initial concept development through data analysis and publication.
The Evolution of BDRC
The collaborative has grown through three phases:
State of the Science (SOS) (2020-2021): We discovered what we knew and ranked research priorities
National Research Blueprint (Phase 2): We identified what resources and infrastructure we needed
Bleeding Disorders Research Collaborative (Phase 3 - Current): We're now implementing what we've built and writing grants to fund meaningful research
Community Voices in Research (CVR): This is an online registry where people share their experiences through surveys. We turn individual stories into powerful evidence (one story is important, but 100 stories become proof that can drive change).
Over 1,300 people are already participating and helping define what it means to live with a bleeding disorder.
How You Can Help
- If you have a bleeding disorder or family member who does: Consider joining CVR
- If you're a healthcare provider or researcher: Help spread awareness and encourage enrollment
Why This Matters
By including the voices and experiences of people who live with bleeding disorders, we can make research more relevant, trustworthy, and impactful. Together, we can ensure that research truly serves the community that it's meant to help.
Other Ways to Get Involved:
- Virtual Advisory Panels (VAPs) where community members give input
- Grants programs
- Educational material development
The Research Ambassador Program creates an unprecedented pathway for community members to evolve from research participants to research leaders. This continuum includes four levels:
- Engaged LEE - Interested in learning about research participation
- Informed Participant - Receiving training to become research literate
- Research Consultant - Providing input on study design and research priorities
- Research Leader - Taking on leadership roles in driving and initiating research
What's next?
BDRC continues to grow by:
- Training more community members to become research partners
- Creating new opportunities for collaboration between researchers and the community
- Securing long-term funding to sustain these efforts
- Expanding participation to include diverse perspectives from across the bleeding disorders community