Happy Valentine’s Day!
We hope everyone’s enjoying some treats and appreciating the people they love today– whether that’s a romantic partner, a friend, or a family member. We’re starting out the this newsletter with an article on how clearer language to discuss rare disease could lead to better treatments. Next we’ve got something we love– Chan-Zuckerburg support for rare disease research! After that, we have a throwback article from 2016 asking the timeless question– how do you navigate chronic illness and dating. Last but not least, we have a story about a PKU patient and advocate creating a documentary for the community. Sit back, try to deceipher a fuzzy message on a conversation heart, and enjoy our editor’s choice!
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Why Clearer Rare Disease Definitions Are Necessary To Creating Cures
How we talk about rare disease matters, and clearer labels can accelorate research.
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Chan Zuckerberg Initiative Breaks into Rare Diseases with 30 Grants for Patient Groups
Chan-Zuckerburg hopes to tackle a wide range of diseases, and the rare group hasn’t been missed! Groups supporting diseases like Glut-1 deficiency benefit from this group of grants.
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Chronically Ill and Dating Doctors, Part 1
Chronic illness can make dating- an already challenging task- even more complicated (and more rewarding). One woman shares her story.
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Support “The Making of Justice” a Documentary About Seeking Treatment with a Rare Disease
Jennifer is doing the work to get her message out there: patients facing rare diseases like PKU face enormous obstacles and deserve better.
