Founded by patients, for patients.
We envision a world where every rare-disease baby born is provided with the privileged care that maximizes the baby’s outcome and improves the entire family’s experience in the process.
Our Mission
Our mission is to provide every resource, both inside and outside the hospital, to every baby born with a rare disease, ensuring they achieve the best possible medical outcome for their condition.
Remove Barriers to Care
MOH understands that rare diseases create unique challenges for patients, families, and medical teams. These include coordination issues, delayed diagnoses, geographic barriers, and high costs of uncovered tests, all while families face overwhelming grief. Our focus is on addressing these obstacles to improve care and outcomes.
Improve Patient Outcomes
By enhancing coordination, timely access to resources, and removing barriers to care, we aim to improve patient outcomes. This includes faster diagnoses, efficient treatment plans, and education programs to raise awareness. These efforts drive the changes needed for better care and outcomes.
Improve Care Coordination
When a rare disease baby is born, there is no dedicated doctor to guide the family. Our Rare Disease Medical Advocate coordinates care among pediatricians, specialists, and therapists to streamline appointments and ensure clear communication. This support helps families navigate the process efficiently and have the best possible experience.
Reduce Time Delays
One in ten Americans lives with a rare disease, yet it takes an average of five years to receive a diagnosis—far too long. Our goal is to shorten this timeline by streamlining screenings, testing, and treatments. This ensures families get timely answers and access to care within critical treatment windows.
Our Crash Landing
Crash Landings happen everyday in the Medical world. You just hope you have a Captain Sully on your team!
