Categories

Tag: Rare diseases

Komodo Health: Chan Zuckerberg Initiative Partnership, Rare Disease Patients, and… IPO Rumors?

By JESSICA DaMASSA, WTF HEALTH

Komodo Health has been catching lots of buzz lately thanks to a recently announced partnership with the Chan Zuckerberg Initiative’s Rare as One Network AND some chatter about a possible upcoming IPO that seems to have come from its own CEO Arif Nathoo. To check what’s true and what’s false, we sat down with Komodo’s President, Web Sun.

What did we learn? Well… a lot. The core of both the CZI partnership and the future of Komodo’s business is their Healthcare Map, which Web says draws together the data of more patients (300M+), across a longer period of time (as long as 6-years for some cohorts) than anyone else in the industry. But, this comprehensive, longitudinal view of the patient journey is only part of Komodo’s usefulness – the other part is how they use that dataset to surface insights.

As Web talks about how all this will manifest itself in the context of rare diseases to benefit the patients who belong to the 60 different advocacy organizations that will now have access to Komodo thanks to the CZI partnership, it’s not only easy to understand how comprehensive data can help rare disease patients, but how this is a metaphor for helping all patients across all manner of healthcare. Shortening the diagnostic journey, better understanding symptom patterns and comorbidities, matching patients to specialists highly experienced and adept at managing their conditions, quickly bridging connections to novel therapies and clinical trial opportunities… how beautiful that this will be offered to patients who need it most. The market potential, however, lies in how it will be scaled-up-and-out to the rest of us – which brings us back to those exit rumors! Tune in to hear what Web has to say about his co-founder’s comments, and how he believes Komodo is differentiated from other big data businesses in the analytics space.

Of Zebras, Rare Diseases, and Google

When you hear hoof beats behind you, don’t expect to see a zebra.

Medical aphorism on the rarity of rare diseases

A rare or “orphan” disease affects fewer than 200,000 people in the United States. There are more than 6,000 rare disorders that, taken together, affect approximately 25 million Americans.

National Organization for Rare Disorders (NORD)

I have been asked to speak before a group of seniors about rare diseases. The thought fills me with trepidation. I am not an expert on rare diseases. There are so many of them. I fear being misquoted or misunderstood. I worry about malpractice implications, even though I am no longer in practice.

Nevertheless I am going to give the seniors my two cents worth, which is about what my opinion is worth. The temptation is irresistible. “To talk of diseases,” as Sir William Osler said, “is a sort of Arabian Nights entertainment.”Continue reading…

assetto corsa mods