Ciitizen Forges New Path as Independent Company
Continuing our quest to improve the lives of patients with rare and complex conditions
Today marks a significant moment for the Ciitizen team as we embark on the next phase of our mission. Following today’s divestiture from Invitae Corporation (NVTA), we are forging a new path as an independent company, and I could not be more excited about the path ahead.
Since our formation in 2017, our purpose has centered around enhancing the lives of patients with rare and complex diseases, rooted in the personal experiences of our team members who have navigated first hand a healthcare system falling short of its promise. As Ciitizen moves forward, our intensified focus and new long-term funding will mean we can move faster, free from distractions, and capitalize on our achievements.
Our renewed focus will lead to new solutions which enable patients to access the best therapies and support, while continuing to help get much-needed drugs and new therapies to market faster. With over 10,000 known rare diseases, a staggering 95% lack FDA-approved therapies. And while we’ve long cited this statistic, shifting it has been flabbergastingly slow. This leaves patients and caregivers contending not only with limited treatment options, but also grappling with the daily stress of navigating complex healthcare systems and making critical decisions for their well-being.
There’s something very special and unique about our patient-directed approach. Through our direct relationships with patients we gather health records on their behalf, spanning both their lifetime and entire medical history. This allows us to craft detailed and personalized patient and disease profiles, all seamlessly integrated as part of the Ciitizen platform. Our patient and disease profiles are easily accessible and shareable, helping doctors, patients and caregivers make informed and timely treatment decisions, and providing researchers with the richest real world information to develop novel therapies. We are now building the next generation of the Ciitizen platform to become a nerve center and compass for patients, helping identify the best therapies and care.
Embarking on our independent journey is an absolute privilege. I am so grateful to collaborate with a mission-driven team, starting with my co-founder Nasha Fitter, a rare disease parent and leader of one of our patient advocacy partners, the FOXG1 Research Foundation. Her story exemplifies the crucial role patients and caregivers play as experts in their diseases, partnering with their doctors with invaluable perspectives and knowledge. Nasha’s insights have saved numerous families from years of agony, highlighting that the rarer the disease, the more the knowledge and understanding of the condition is driven by the patient and caregiver community. Harnessing this collective wisdom to deliver precise and personalized treatments for each unique patient is at the heart of our mission.
I’m thrilled to continue on this journey with our existing core leadership team, including Deven McGraw and Elli Brimble. Deven assumes the role of Chief Regulatory Officer. She was the former HIPAA policy and enforcement lead for the U.S government and has dedicated her career to fighting for patients’ rights to their health information. Elli, the former co-director of Stanford neurogenomics, leads our clinical strategy. I’m also delighted to welcome David Fisch who was a key player in the early successes of Facebook, Stubhub and Houzz, and will spearhead the expansion of the services and solutions we provide to patients. We are so fortunate to have such a talented, experienced and principled group of leaders on the team.
While we are at the threshold of some transformative advancements, our vision guides us toward an inevitable reality. We see a future where every patient, regardless of their condition’s stage or nature, has immediate access to exceptional guidance and personalized options available at that precise point in time. We embark on this collective journey with profound gratitude for the strong relationships and supportive communities that will shape this vision into a tangible reality. To patient advocacy organizations, leaders, advocates, researchers and especially the patients we serve: your presence, support and passion are instrumental in building our collective community, and for that, we could not be more grateful. Together, we know we can radically improve patient lives and revolutionize drug development and therapies for rare disease.
Co-founder and CEO
Frequently Asked Questions
On December 13th 2023 Ciitizen announced its formation as an independent company following its divestiture by Invitae Corporation. Ciitizen will continue with its mission to enable faster drug development and improve therapies and support for patients with rare and complex diseases.
Ciitizen’s mission to enhance the lives of patients with rare and complex diseases is not changing. The company is building the richest and most comprehensive knowledge base for rare and complex diseases which will help accelerate drug development and improve therapies and support for patients.
As an independent company with new long-term funding Ciitizen will be investing significantly into platform improvements including easier sign-up, better search and querying, and new tools to improve patient care.
Ciitizen’s intensified focus and new long-term funding will enable the company to invest heavily into its platform and develop new solutions faster. The new platform will help biopharma accelerate drug development, patients will have access to improved guidance, support and therapies, and academics will have access to richer patient consented data to support their research.
Invitae and Ciitizen aligned on this divestiture being in the best interests of the patients they jointly serve. Ciitizen’s divestiture from Invitae together with new long-term funding will enable significant investment into the Ciitizen platform.
Ciitizen began operating as an independent company on December 13th 2023.
Ciitizen and Invitae intend to collaborate on key initiatives as the Ciitizen platform expands globally
Existing services will continue to be available and Ciitizen will be adding new services and improvements to the platform. These improvements include easier sign-up, better search and querying, and new tools to improve patient care.
Ciitizen users will continue to have control of the information in their records, and this information won’t be shared with third parties outside of Ciitizen without patient consent. The Ciitizen service and platform will continue to be free to patients regardless of whether or not they share their health data.
Yes, our users will continue to have no-cost access to the platform.
Yes. You can always choose to close your Ciitizen account for any reason.
Yes. Please contact firstname.lastname@example.org with any questions about research or the status of your consent settings.
Ciitizen’s business model licenses research grade summary data created from your medical records. Data will only be shared if you have consented to data sharing for research purposes. It will not be shared without your consent. All Ciitizen users have the choice on whether to share their data. The Ciitizen service is provided to all patients free of charge, irrespective of the decision they take on data sharing.
Your data will continue to be protected by the same security policies, protocols and safeguards after Ciitizen’s divestiture from Invitae.
No. Ciitizen’s robust privacy policies form the basis of the user trust established since the company was formed in 2017. Ciitizen is required by law to inform all it’s users about any significant change to its privacy policies or terms of service.
No. Research projects are not stopping and all ongoing research initiatives will continue uninterrupted.
There are no planned changes to any ongoing research projects.