Making Connections
We're bringing the benefits of genetic research to those who need it the most.
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RARE GENOMICS NEWSLETTER
February 2021
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Stay updated on the latest services, collaborations, and opportunities we have. At the same time, we'll share ways you can help us advocate for the needs of rare disease families. With your input and support, we can find new ways to do more!
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Join Us for Rare Disease Day!
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Every year, on the last day of February, patients worldwide stand together and make their voices heard on Rare Disease Day. Last year, people and organizations from more than 100 countries and regions across the world participated in Rare Disease Day, including the Rare Genomics Institute (RG). This year, February 28th, 2021 marks the fourteenth annual Rare Disease Day.
Rare Disease Day is an opportunity for RG, the rare disease community, and patients worldwide to raise awareness for rare diseases and to support those living with rare diseases. You can help struggling families this year. Put Rare Disease Day, February 28th, on your calendar and be a part of a global movement!
Learn more about Rare Disease Day and how to get involved with RG.
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At the Rare Genomics Institute (RG), our volunteers ARE our organization. RG’s platform is the first of its kind and has helped to advance the understanding of rare diseases globally, but we simply could not function without our volunteers. We’re doing big things at RG. Here’s what our volunteers have to say about their experiences helping rare patients:
My experience here has taught me that no matter what the challenge is, there should always be hope to overcome it. - Aanchal Shah
Volunteering for RG means leveraging my time and skillsets to further RG's mission of helping rare disease patients manage and treat their conditions.- Nick Shea
I volunteer for RG to provide support and hope for rare disease patients and their families, so they're not alone in their fight to find answers.- Aly McDonald
Check out how you can help RG volunteers
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American Heart Month occurs every February. This year, in honor of patients living with rare diseases which affect the heart, we’re highlighting two specific conditions: Brugada syndrome and peripartum cardiomyopathy (PPCM).
Brugada syndrome is a rare inherited cardiovascular disorder characterized by disturbances affecting the electrical system of the heart, and occurs in about 5 in 10,000 people.
Peripartum cardiomyopathy (PPCM) is a potentially fatal form of dilated cardiomyopathy that develops during the final month of pregnancy or within five months after delivery. About 1,000 to 1,300 women develop the condition in the U.S. each year.
To learn more about Brugada syndrome, peripartum cardiomyopathy (PPCM), or other rare diseases, visit the Rare Disease List on our website.
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COVID-19 and Rare Disease Patients
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The Rare Genomics Instutite (“RG”) is committed to helping patients find the treatment that is right for them. However, our work does not occur in a vacuum. Innovations in rare disease treatment, and the ability to connect people to the physicians who can treat them properly, has undoubtedly been affected by the pandemic. Learn more about how COVID-19 is impacting rare disease patients and their families.
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Support Rare Genomics Institute with Every Amazon Purchase
You can now support Rare Genomics Institute each time you make a purchase through the Amazon app on your mobile phone! All you have to do is enable AmazonSmile, a program that donates 0.5% of your eligible purchases to us, at no extra cost. It’s an easy way to make every purchase count.
Follow these steps to turn on AmazonSmile on your iOS or Android device :
- Open the Amazon shopping app on your mobile device
- Go into the main menu and tap into “Settings”
- Tap “AmazonSmile” and follow the on-screen instructions to complete the process
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