News & Events

Why Even Fame Can’t Shield Jameela Jamil From The Ugly Truth About Ehlers Danlos Syndrome

By DM Sullivan  2019 brought much hope to the long-silent-suffering Ehlers Danlos Community when Lena Dunham, Jameela Jamil, and SIA revealed their EDS diagnoses. It felt like a celebrity endorsement of sorts. EDS suddenly went from “what?” to the “disease du jour” and was all over social media and pop culture news programs like Entertainment… Continue Reading »

Why Complex Medical Families Are Grateful To Justina

By DM Sullivan This week, the long-delayed Justina Pelletier lawsuit goes to court.  Rare disease and complex medical families are watching very closely because since 2013 when Justina was taken into state custody after a disagreement between her parents and doctors at Boston Children’s Hospital, things have seemed to get worse not better. Rare disease… Continue Reading »

Why Grey’s Anatomy Did Not Blow The Ehlers Danlos Episode

By DM. Sullivan ABC’s medical drama Grey’s Anatomy’s recently aired an episode, Falling Slowly, which featured a story line about a young patient with Ehlers Danlos Syndrome, and a grateful EDS Community has been abuzz on social media ever since. Thank you for finally giving us a voice! Validation at last! Awareness! Well, sort of……. Continue Reading »

Teen’s Unique Web-Design Fundraising Strategy Aids Companies and Nonprofits

Rare Daily, by Global Genes (Editor) Ilana Jacqueline is the Managing Editor of The RARE Daily at Global Genes. She assists the patient community… The Greenville, South Carolina native had a unique idea for how to raise funds for her favorite charities. In exchange for a $1000 donation, she would offer companies a complete website… Continue Reading »

Paving The Way! Back To School For Kids In Pain

When a child is living with pain and chronic health issues, back to school can be a time of mixed emotions and added logistics for parents to navigate. I woke up this morning, ignored the pit in my stomach and made THAT call. You know, the call to the Special Education Director to give an… Continue Reading »