At 23andMe, we believe in fostering individual empowerment and increasing access to genetic information with the goal of making a difference in people’s lives. Nowhere is this more apparent than in our disease research communities, especially those for rare diseases like sarcoma and myeloproliferative neoplasms (MPNs). Patients from all over the world can contribute directly to research and connect with others who have their disease, all while learning more about themselves and their genetics. We’re amazed at the progress these initiatives have made, but there’s still a long way to go. With Rare Disease Day this week, we hope you’ll help us spread the word to encourage participation in our innovative research efforts for rare disease.
Our Partners in Sarcoma
Our patient advocacy partners include Sarcoma Alliance, Beat Sarcoma, Sarcoma Foundation of America, Sarcoma UK, and ACOR. Many experts in sarcoma have also joined our cause to serve in an unpaid advisory role, including George Demetri, Bob Maki, Judy Garber, and Mark Robson.
23andMe’s Sarcoma Community: A Patient-Driven Revolution in Sarcoma Research
In April of 2010, 23andMe launched a disease research initiative focused on sarcomas, a group of rare cancers that affect the bone and connective tissues. With the help of numerous advocacy groups, scientific advisors, and patients themselves, we now have the largest genotyped sarcoma cohort in the world. The majority of our patients have a soft tissue sarcoma, and leiomyosarcoma and liposarcomas are the most common subtypes reported by our participants.
We’re nearly at our goal of 1,000 participants in our Sarcoma Community — more than 700 people who have had sarcoma have joined our growing community.
Help us reach 800 participants this week! If you’ve been diagnosed with sarcoma, we encourage you to enroll. If you know someone who has or had sarcoma, let them know about this unique opportunity. And simply spread the word — every little bit helps! Visit https://www.23andme.com/sarcoma to participate or learn more.
(Already enrolled? Do your part by making sure you’ve sent back your DNA collection kit and by filling out the “Sarcoma Background Survey”! Log in to your account here.)
Our MPN Advisors
We are honored to have MPN experts Jason Gotlib, James Zehnder, and Ruben Mesa serving as unpaid scientific advisors in our research efforts.
23andMe’s Myeloproliferative Neoplasms Research Initiative
Last summer we launched an initiative to study myeloproliferative neoplasms (MPNs), a group of very rare blood cancers. Our MPN cohort is an amazing example of the power of social media. In only six months we’ve enrolled more than 400 participants, mostly through individuals posting on Facebook and online forums. MPN patients are motivated, driven, and engaged in research, and we are humbled to work with them to make scientific discoveries. Already our participants have contributed data that supports possible connections between specific genetic mutations and MPN subtypes (check back soon for more on this topic!).
As with other rare diseases, numbers are important. The more participants we have, the more likely we’ll be to make breakthroughs. Help us reach 500 participants this week — if you have a myeloproliferative disorder (including myelofibrosis, essential thrombocythemia, polycythemia vera, chronic myelogenous leukemia, mastocytosis, or hypereosinophilic syndrome (HES) and related eosinophil disorders), join our cause. If you know someone with one of these disorders, encourage them to enroll! And simply spread the word, because every little bit helps. Visit https://www.23andme.com/mpn to participate or learn more.
(Already enrolled? Do your part by making sure you’ve sent back your DNA collection kit and by filling out the two MPN research surveys: “Background” and “Symptoms Assessment”! Log in to your account here.)
Feb 29th is Rare Disease Day! Check back for more information about rare disease and how you can help.