Rare STRIDES® mission is to empower patients and medical teams with innovative tools to successfully fight rare diseases, and we are committed to the delivery of exceptional clinical care for rare patients in every medical setting. We are passionate about giving back to fund patient programs and continued innovation for children and adults with rare diseases who deserve excellence in healthcare.
Who We Are
We are a compassionate team of nurses, physicians and business leaders driven by our personal love for the rare community.
What We Do
We make rare visible in direct medical care with real world evidence and innovation to help save lives!
How We Accomplish Our Mission
Our exceptional care coordination Rare Model of Care™ Module with advanced Interactive Diagnostic Modeling™ supports rapid diagnostic next steps, continuous development and delivery of superior advanced practice models in medicine for children and adults with rare diseases using a collaborative multidisciplinary team approach.
What does STRIDES® stand for?
STRIDES® stands for Strategic, Technology for Rapid Identification of Diseases/Disorders Evaluation System.
Code Rare ®
Code Rare® is a pilot program spearheaded by a paramedic and passionate registered nurse with a rare disease as a vital nationwide call to action: #Make Rare Visible!
CODE RARE® shall be initiated by First Responders and hospitals to trigger immediate education delivery and specialized resources by Rare STRIDES® nurses for medical teams taking care of patients with rare diseases.
The mission of Code Rare® is to inspire medical teams to collaborate with nonprofits, patients, and families through Rare STRIDES® Nurses Speaker’s Bureau to advance understanding about next steps, diagnostics and patient-centered clinical care delivery for rare diseases.
The goal of Code Rare® for patients and families is to support and improve the quality of life for children and adults with rare diseases in all aspects of their healthcare journey.
Did you know that as of 2023 there are more than 10,000 rare diseases that affect an estimated 350 million people worldwide?
Medical team members are invited to explore clinical care and outcomes when next steps in care are applied to the patient journey.
We have several white papers and posters available for presentation at your conference.
Rare Wish Fund ®
Rare Wish Program Mission: Rare Wish is a nonprofit with the mission to improve the quality of life for rare families by granting wishes, funding clinical innovation, and offering free healthcare tools.
Our team is comprised of volunteers from all across the United States.
Are you interested in volunteering your time and skills?
Beth Nguyen, RN
Trena Myers, MBA
Matt Conway, MBA
Dr Lisa Rama, DNP, RN, M.Ed
Hope the Zebra
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