Founded by patients, for patients
miracle of hudson
We envision a world where every rare-disease baby born is provided with the support to shift their family’s experience from trauma to celebration.
OUR MISSION
Our mission is to recruit, train, and mobilize the best nurse navigators in the world to provide a better quality of life for rare-disease babies and their family.
NURSE NAVIGATOR GOALS
Remove Barriers to Care
MOH recognizes that rare diseases present unique obstacle 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, a shortage in trained geneticists and the accompanying geographic barriers that result, long wait times to be seen by specialists, highs costs of tests not covered by insurance and the overwhelming grief the family is experiencing while trying to navigate all of this.
Improve Care Coordination
;here is no ‘rare disease doctor’ that comes into the room when a rare disease baby is born. Our Nurse Navigators will help the patient and their family by: coordinating between pediatricians, physicians and other specialists to effectively and efficiently schedule appointments; 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.
Improve Patient Outcomes
Through improved coordination, 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.
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 Values
We implement a zero tolerance policy on our values with any employee, volunteer, or partner we work with. These values are the foundation from which we can promote and realize greater outcomes for our patients and their families.
Compassion
The literal meaning is to recognize the suffering of others and taking action to help. This is the cornerstone of the Miracle of Hudson. Without compassion, we cannot sustain the motivation and energy required to foster and create the help we covet.
Persistence
At MoH, the value of persistence is what will keep us moving forward. Every representative of our Network will be reminded daily of the importance of staying persistent in our goals for improving the lives of our patients and their families through each little step and responsibility we champion. The families we serve will hopefully be inspired to be just as persistent when advocating for their child or loved one.
Collaboration
MoH prioritizes collaboration internally and externally to ensure we are moving towards our goals. This requires many different people and organizations working together as a unified team. This team can include pediatricians, maternity wards, nurses, other nurse navigation programs, specialists, insurance professionals, social workers, therapists, and more.
Connected Learning
MoH Nurses and support staff are dedicated to pushing the envelope in our commitment to connected learning. This includes a continuous process of exploration for better systems and processes internally. This also includes the understanding that parents, siblings, family and caretakers of our unique and rare disease patients become experts in their own right. So, we want to learn from our patients as much as we want to teach and advocate for them.
Inclusion
MoH understands on a personal level the importance of inclusion. Rare disease children face barriers in life that are a result of no fault of their own or their families. Regardless of race, gender, social status, or any other factor, these children are forever bonded by their collective rareness. It is extremely important to MoH that other children and adults are educated on the importance of inclusion.
OUR crash landing
A LITTLE ABOUT OUR MIRACLE
January 15, 2009. US Airways Flight 1549’s Captain Sully instructs his passengers to brace for impact as they will be landing IN the Hudson River. Imagine the thoughts consuming every soul on that aircraft. Will I survive? Why didn’t I miss this flight? Why THIS flight? Will I drown? Will the plane explode? I hope my family & friends know I love them so much!
You know the happy ending to this story. Captain Sully miraculously landed this giant aircraft safely on the Hudson River where boaters then heroically responded and rescued every life onboard.
Similar thoughts went through the heads of Hudson’s parents on Hudson’s birth date, December 21, 2017. As soon as Hudson was born, something was different. But, how? All of Hudson’s prenatal scans had been considered normal. Low muscle tone, a cleft a palate and medical terms the family couldn’t pronounce were being thrown around by NICU nurses who had hustled in. This was the first time “Genetic syndrome” was mentioned.
