Happy Thursday!
This week, we’re highlighting a story about a story about Karina, an EDS patient and advocate. Next, we have a story about a legal controversy that could affect the rare community and a summary on gene sequencing implications. Finally, we have a story about hopes of some CF patients. Sit back and enjoy our editor’s choice!
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‘We Are Visible’ — How Karina Turned Advocacy into Art
Karina might not look sick, but she actually lives with a condition called EDS. Check out how she’s brining it to the spotlight.
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ICYMI: The Affordable Care Act May be Ruled Unconstitutional: Patient Groups Unite to Ask for a Prompt Decision
Patient organizations are working to make sure their treatments will be protected.
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How Genome Sequencing can Help Understand and Treat Diseases
Genome sequencing is a big buzz word in the research community, but how is it actually being applied? [/one_half_last] [one_half]
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“We Were Most Excited to Someday Not Take Pills and to Not Do Vest Therapies”: Her Lifetime With Cystic Fibrosis
Martha, a CF patient, shares the difficulties, hopes, and sorrows of living with cystic fibrosis. [one_half]
