Nebula Genomics Recognizes World Rare Disease Day With Advocacy Collaborations, Opens Platform to Rare Disease Patients, Researchers

BOSTON & SAN FRANCISCO--(BUSINESS WIRE)-- Nebula Genomics today announced its support for 2019 World Rare Disease Day with multiple collaborations across the rare disease community. The privacy-focused DNA testing company launched a low-pass genetic sequencing product for consumers late last year and soon plans to release a clinical-grade whole genome sequencing test to the public.

Nebula’s interest in the rare disease community is focused on increasing the number of patients sequenced to enhance the scientific community’s understanding of these diseases. The fact remains that recruiting enough patients to adequately understand a disease’s genetic makeup can be daunting.

“We need patients to actively and transparently get involved in the discovery process,” says Nebula Co-Founder, Kamal Obbad. “We’ve created a place where individuals can work together to securely share their genomic data with researchers to help drive forward medical discoveries.”

The more patients sequenced, the more scientists can learn about these complex conditions and the closer they become to finding treatment. The company currently offers low-pass sequencing as an affordable entry to personal genomics and will soon be offering clinical-grade sequencing for those who want more insight into how genetics impacts their health.

“It’s the advocacy groups that give patients the support and resources they need,” says Ilana Jacqueline, Nebula’s Director of Patient Advocacy. “We want to join their efforts and share with patients how our platform can be a new tool for creating solutions—but it only works if we work together.”

To help kick-start the initiative, Nebula will be collaborating with the international rare and genetic disease organization Global Genes, The Rare Advocacy Movement, Inspire, whose healthcare social network includes more than 350,000 members affected by a rare disease, and patient-centric news source, The Mighty. They will be joining Nebula in urging rare disease patients to make the most of their genomic data as well as providing feedback on Nebula’s current services to ensure that they are meeting the community’s unique needs.

Nebula will be sponsoring a limited number of clinical-grade whole genome sequencing tests. Patients will receive the free testing along with a report, a raw data file of their entire genome and a follow-up appointment with a genetic counselor to discuss their results.

Nebula also plans to give back a portion of their proceeds directly to advocacy partners to help fund their other programs. Friends and family of rare patients can purchase their own sequencing through the site and choose which organization to donate to.

Whether users are impacted by a rare disease or simply want to learn more about their ancestry, health or personality traits, Nebula is a new way to take control of your most personal data. Users can choose to upload pre-existing genetic data from other DNA testing companies or purchase their tests directly from Nebula Genomics. They can also answer surveys and refer friends to earn credits towards free sequencing.

Nebula seeks to create a simple, convenient and secure way to share personal genomic data. User data is secured using multiple cryptographic technologies and each time a patient consents to their data being purchased by researchers, they’re compensated for its use.

“We hope to incentivize personal genome sequencing and sharing of genomic data with researchers. This will enable more scientific research that could lead to new treatments and improved quality of life for many patients,” says Dennis Grishin, Nebula Co-Founder.

With 95% of rare diseases still lacking an FDA-approved treatment, there is a great need for more genomic data. The greatest obstacle to attaining this data has been a lack of trust between companies and their users. This isn’t a surprise to industry experts who have watched sequencing giants mismanage consent and sell patient data out from underneath them.

“People are the priority,” says Jacqueline. “Their needs come first, second and last. When communities come together, we can improve the scientific understanding of these rare conditions. For us, Rare Disease Day isn’t just the last day in February—it is every day of the year.”

About Nebula Genomics

Nebula Genomics seeks to usher in the era of personal genomics by building a distributed platform that will accelerate genomic data generation, facilitate data access and streamline data analysis. The Nebula platform uses blockchain and privacy-preserving technologies to enable individuals to maintain control of their personal genomic data, share it securely and get compensated equitably. By incentivizing personal genome sequencing and genomic data sharing Nebula Genomics will make large genomic datasets available to researchers which will help advance understanding of human genetics, accelerate drug discovery and streamline clinical trials. The company was founded by Harvard genomics pioneer George Church, along with Harvard researchers Dennis Grishin and Kamal Obbad. Founded in 2017, Nebula Genomics has offices in San Francisco, CA and Boston, MA and is backed by investors including Khosla Ventures, Arch Venture Partners, Fenbushi Capital, Mayfield, F-Prime Capital Partners, GreatPoint Ventures, Hemi Ventures, and Mirae Asset. For more information, follow @NebulaGenomics on Twitter and Facebook or visit nebula.org.

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