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 patient’s family in the process.
Our Mission
Our mission is to provide every resource inside and outside of the hospital to every rare disease baby born so that they have the best medical outcome possible for their rare disease.
Remove Barriers to Care
MOH recognizes that rare diseases present unique obstacles for the patient, their families, and their medical team. These barriers include coordination between doctors and specialists, difficulty in differentiating between developmental delays and rare disease symptoms, geographic barriers, long wait times to be seen by specialists or therapists, high costs of tests not covered by insurance and the overwhelming grief the family is experiencing while trying to navigate all of this.
Improve Patient Outcomes
Through improved coordination, access go necessary resources in a timely manner, education and outreach, and the removal of as many barriers to care as we can, the outcome for our patients will be improved. This includes faster diagnosis, expedited and efficient treatment plans, and an education and outreach program that helps raise awareness for the changes necessary to realize these greater improved patient outcomes.
Improve Care Coordination
There is no ‘rare disease doctor’ that comes into the room when a rare disease baby is born. Our Rare Disease Medical Advocate will lead the patient and their family by coordinating between pediatricians, physicians, therapists and other specialists to schedule appointments effectively and efficiently; communicate between these professionals so that nothing is lost in translation; reduce missed or cancelled appointments; and work with the families to enjoy the best overall experience possible during the appointments.
Reduce Time Between Abnormal Findings, Screenings, and Treatments/Testing
1 out of 10 Americans is living with a rare disease today. On average, it is taking 5 years for rare disease patients to receive a diagnosis. This is just too long. Our goal is to reduce this time so that treatment windows are not missed, and families get the answers that will help them to understand their new normal.
Our Crash Landing
Crash Landings happen everyday in the Medical world. You just hope you have a Captain Sully on your team!
