Hope everybody is catching up after Rare Disease Week!
We’re so glad we got to see advocates and patients at RDW making the rare voice heard in DC last week. Now, we’re back, and we’re highlighting four stories. First, we have an article about an organization helping patients who live far away from the medical care they need. Next, a contributor tells us how SDS helped her find hwer power. After that, we have news about how heart research may change, and a story about a girl whose legacy has saved the lives of others.
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Miracle Flights has Paid for Over 130,000 Flights to get Rare Disease Patients to Appointments
When your disease is rare, you might not be able to find specialized treatment in the area. This group is helping out. [one_half]
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How My Rare Disease Helped Me Find My Voice
Singer/Songwriter Gracie shares her journey with SDS and finding her power. [one_half]
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Idiopathic Thrombocytopenic Purpura Took the Life of a Teen, but Her Organs Saved the Lives of Others
The loss of a 16-year-old girl caused shock and grief in her commmunity. Her generosity and kindness lives on after her. [one_half]
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3D Models of the Heart are Changing Approaches to Research
Heart research can speed up when scientists start looking at the organ in new ways.
