A Silicon Valley-based startup previously referred to as Ciitizen relaunched Tuesday as Citizen Well being — asserting a $14.5 million seed funding spherical led by Transformation Capital and a brand new partnership with the Chan Zuckerberg Initiative.

The corporate's efforts started in 2017, when Ciitizen launched with the purpose of giving sufferers higher entry to their well being data. The startup was then acquired by Invitae in 2021 in a $325 million take care of the purpose of giving sufferers entry to genetic assessments and their well being data in a single place.

In December – two months earlier than Invitae filed for chapter – the corporate offered the Ciitizen platform. Invitae mentioned it has transferred its property to “a brand new entity created by the Ciitizen firm management group and funded by a gaggle of enterprise capital buyers.”

That new entity has now formally launched and the overarching objective has remained the identical: to offer sufferers entry to their total well being historical past.

Most of Ciitizen's work has been centered on oncology, however the brand new startup focuses on uncommon illnesses, mentioned Farid Vij, CEO of Citizen Well being.

“Our focus now’s: how will we assist sufferers entry all their data? Which means their medical data, genetic genomic data, imaging information and self-reported system information so we will paint an entire image of a affected person's well being – after which actually leverage AI and the group to ship a extra customized expertise for them . And the place we begin is with uncommon illnesses,” he defined.

Vij identified that half a billion individuals worldwide are affected by uncommon illnesses – and that 95% of those illnesses haven’t any remedy. He additionally famous that sufferers and households usually know extra concerning the illness and find out how to handle it than the physician does as a result of the situation is so uncommon.

Nearly all of uncommon illness sufferers are kids, he added.

“It's not only a affected person who’s affected, it's the entire household. And plenty of of those are fairly critical circumstances: the typical affected person on our platform is seen by 9 completely different healthcare suppliers on the identical time. So your information is unfold all over the place. You go to the neurologist, the nutritionist and the occupational therapist on a regular basis, and so they don't all speak to one another, so it's very tough to get your complete story in line,” says Vij.

Citizen Well being not solely unifies every affected person's particular person journey, but in addition permits them to share their journey with different sufferers on the platform.

By making a platform the place shared experiences could be mentioned, Citizen Well being provides its customers the chance to attach with others and doubtlessly study extra about which therapies work and which don't, Vij famous.

“Alternatively, in case you put all that data collectively, it's most likely the richest supply of knowledge to drive analysis and drug growth. The explosion we’re seeing in drug growth for uncommon illnesses proves that the normal course of is just not working properly – as a result of it is vitally tough to search out sufferers, and it is vitally tough to get information on these uncommon populations,” he mentioned .

By stratifying the info on the Citizen Well being platform into completely different affected person cohorts, researchers can start to know the pure historical past of sure illnesses and what signs appear to be in teams of sufferers, Vij factors out.

As for the startup's enterprise mannequin, Citizen Well being makes cash by sharing affected person information, however customers of the platform should give express consent earlier than their information is shared, he mentioned.

“We discuss this on a regular basis: that our healthcare information is usually offered with out our data. We don’t promote information. We make sure that sufferers can share their information for analysis functions and management who sees their information and for what objective. At any time when there may be any industrial use of the info, Citizen makes cash – and we truly take a % of that and share it again with the affected person, in addition to a % again with our non-profit companions if they’re concerned in that situation space,” Vij defined out.

The nonprofit companions he talked about are primarily organizations led by sufferers with uncommon illnesses or their caregivers who need to present help and sources to the affected group, in addition to advocate for higher analysis.

When corporations are clear with sufferers about how their information is used, sufferers will often select to share their information, Vij mentioned. He mentioned greater than 98% of Citizen Well being customers share their information for analysis functions.

Photograph: Galeanu Mihai, Getty Photos