Ending the Odyssey

Ending the Odyssey is endeavoring to shed light on the complex, fragmented, and inequitable system that makes up the newborn screening programs in America, by telling the stories of those lives that are touched by the process.

Ending the Odyssey wants to explore:

The pain caused by the diagnostic odyssey

The power of having the proper diagnosis

The criteria for inclusion on newborn screening panels

Make up the Advisory Committee

Application process and multiple submissions needed

Cost of the RUSP application 

RUSP nomination and evidence review process capacity constraints 

Secondary conditions that do not have treatments

Conditions that have treatments but are not screened for

The burden of developing a therapy before being allowed on NBS

The required pilot, natural history, and prevalence studies

Developing the assays required for screening

The need for residual blood spots

How the values and ethics have changed since the start of screening in the 1960s

Discrepancies between the differing State's programs

The choice for expanded screening

Adult onset disorders

Carrier status

Delays in treatment development due to undiagnosed patients

Newborn screening is full of wonderful success stories of preventing disability and death for those disorders that are included on the screening panels. For those disorders not included on screening panels, it sends patients off into a diagnostic odyssey – essentially as a second-class citizens with the double burden of being undiagnosed and of not having a therapy.

We are glad that you will join us on this journey and along the way meet amazing patients, parents, caregivers, citizen-scientists, advocates, researchers, and physicians who are doing incredible things to change the destiny of those with rare disorders. All because of the proper diagnoses.