Companies share a commitment to supporting patients with this rare, underdiagnosed hereditary condition and are now offering more people the opportunity to learn about their health risk
MOUNTAIN VIEW, CA & CAMBRIDGE, Mass., July 16, 2018 – 23andMe, the leading consumer genetics company, and Alnylam Pharmaceuticals, Inc. (Nasdaq: ALNY), the leading RNAi therapeutics company, are collaborating on a program to offer free 23andMe Health + Ancestry kits to first-degree family members of 23andMe customers with a TTR variant detected in their Hereditary Amyloidosis (TTR-Related) Genetic Health Risk report.
The disease, called TTR-related hereditary amyloidosis, is a genetic condition caused by the buildup of a protein called transthyretin (TTR) in the body’s tissues and organs. This protein buildup, called amyloidosis, can damage the nerves, the heart, and other parts of the body.
“TTR-related hereditary amyloidosis runs in families, but is hard to diagnose due to the various ways symptoms can manifest,” said Anne Wojcicki, chief executive officer and co-founder of 23andMe. “By working with Alnylam to offer free kits to first-degree family members of carriers, we will give individuals the opportunity to learn about their risk, have more informed conversations with their healthcare providers, and have better outcomes.”
The new program is part of a collaboration to raise awareness of this underdiagnosed, but potentially life-threatening, hereditary condition.
In April 2019, 23andMe released a new Genetic Health Risk report, supported in part by Alnylam, that looks at three of the most common TTR variants and provides customers with information on whether their genetics may place them at increased risk for TTR-related hereditary amyloidosis. The condition is highly hereditary, meaning that it is passed through families. If a person has one genetic variant, at least one parent is also expected to have the same variant. In addition, each child and sibling has at least a 50 percent chance of having the variant.
“hATTR amyloidosis is a devastating condition that affects families, generation after generation. This unique collaboration with 23andMe builds on our commitment to raising awareness and providing education about this rare disease, which people often struggle with for years until receiving a proper diagnosis,” said John Maraganore, Ph.D., Chief Executive Officer of Alnylam. “Alnylam and 23andMe share a strong belief in the role genetics plays in improving healthcare and managing diseases, particularly those that have profound impact on patient lives. We’re proud to be supporting the availability of tools like the 23andMe Hereditary Amyloidosis (TTR-Related) Genetic Health Risk report and the +myFamily program.”
As part of the +myFamily program, 23andMe customers who have viewed their own Hereditary Amyloidosis (TTR-Related) report, opted in to participate in 23andMe Research, and have been identified as a carrier will have the opportunity to invite up to six first-degree family members (parent, sibling or child) to receive a free 23andMe Health + Ancestry kit. Family members who choose to participate in the +myFamily program can choose whether they wish to view their health reports, including their Hereditary Amyloidosis (TTR-Related) Genetic Health Risk report.
About the 23andMe Hereditary Amyloidosis (TTR-related) Genetic Health Risk Report
The 23andMe Hereditary Amyloidosis (TTR-related) Genetic Health Risk report looks at three of the most common TTR variants (V122I, V30M, and T60A) that account for an estimated 50-to-80 percent of TTR-related hereditary amyloidosis cases and describes if a person has variants associated with an increased risk of developing TTR-related hereditary amyloidosis. The report does not test for all possible variants linked to TTR-related hereditary amyloidosis. Customers that do not have one of the variants 23andMe tests for could still have a variant not covered in the report. The majority of the variants included in this report have been most studied in people of African American, West African, Portuguese, Northern Swedish, Japanese, Irish, and British descent. 23andMe will not share customers’ individual-level data, personal health information, or personally identifiable information with Alnylam.
About Alnylam Pharmaceuticals
Alnylam (Nasdaq: ALNY) is leading the translation of RNA interference (RNAi) into a whole new class of innovative medicines with the potential to transform the lives of people afflicted with rare genetic, cardio-metabolic, hepatic infectious, and central nervous system (CNS)/ocular diseases. Based on Nobel Prize-winning science, RNAi therapeutics represent a powerful, clinically validated approach for the treatment of a wide range of severe and debilitating diseases. Founded in 2002, Alnylam is delivering on a bold vision to turn scientific possibility into reality, with a robust discovery platform. Alnylam’s first approved RNAi therapeutic is ONPATTRO® (patisiran) available in the U.S., EU and Japan. Alnylam has a deep pipeline of investigational medicines, including five product candidates that are in late-stage development. Looking forward, Alnylam will continue to execute on its “Alnylam 2020” strategy of building a multi-product, commercial-stage biopharmaceutical company with a sustainable pipeline of RNAi-based medicines to address the needs of patients who have limited or inadequate treatment options. Alnylam employs over 1,200 people worldwide and is headquartered in Cambridge, MA. For more information about our people, science and pipeline, please visit www.alnylam.com and engage with us on Twitter at @Alnylam or on LinkedIn.
Alnylam Pharmaceuticals, Inc.
Christine Regan Lindenboom (Investors and Media)
23andMe, Inc. is the leading consumer genetics and research company. Founded in 2006, the mission of the company is to help people access, understand and benefit from the human genome. The company was named by TIME as a “Genius Company” in 2018, and featured as Fast Company's #2 Most Innovative Health Company in 2018. 23andMe has millions of customers worldwide, with more than 80 percent of customers consented to participate in research. 23andMe, Inc. is located in Sunnyvale, CA. More information is available at www.23andMe.com.