#42 Uniting the field to move faster together with Complex Disorders Alliance's Amy Rochlin

Bringing together research across Long Covid, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS), Ehlers-Danlos syndrome (EDS) and other co-morbid conditions heralding faster, patient-specific treatment.

Amy Rochlin’s mission stems from deeply personal understanding, but is driven by exceptional business sense. As the CEO of The Complex Disorders Alliance (CODA), she is pushing to scale funding, research and treatments for patients.

When her daughter became chronically sick overnight, at the age of 16, Amy was forced to learn about complex chronic disorders. Shocked at the lack of effective help, she was inspired to turn her career in financial services and disease research to make a difference for patients like her daughter, joining founder Fidji Simo to lead CODA.

CODA’s strategy hinges on the collaboration of the most prominent minds and organisations in the field, with the aim of helping patients as quickly as possible. The operation is laser-focused on listening to the patient and validating their experience, whilst turning to precision medicine and AI to escalate funding, enhance research opportunity and drive change.

In this episode we discuss:

• How CODA unites leading scientists, clinicians, charities and pharma to move faster together
• Why subtyping and precision medicine could mean the right treatment for the right patient
• CODA’s neuro-immune research portfolio
• Leading new research into craniocervical dysfunction (CCD)
• Collaborations in genomics, microclots, immune dysfunction and vagus nerve stimulation research
• Why patients belong at the heart of research

If you live with Long Covid, ME/CFS, POTS, EDS or another complex chronic illness, and wonder whether anyone is joining the dots, this episode shows that serious people, serious science and serious investment are coming together on your behalf.

By bringing together the research understandings and expert minds of people including Mikki Tal, Nancy Klimas, Resia Pretorius and Kevin Tracey, and organisations such as PrecisionLife, the OMF, and Schmidt Initiative for Long Covid, CODA creates a collaborative that crosses specialties and conditions to move towards treatment options at greater speed.

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