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Hero Fund highlight: Online search helps solve 24-year medical mystery

Confusion, nausea, fever, anger, then back to normal. This was Lauren Vandiver’s life beginning in early childhood. Her parents, Phillip and Angela Vandiver, spent more than twenty years asking the question “why?” Why is she forgetting who we are? Why is she throwing up? Why is she so angry? They knew there had to be […]

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Alabama Rare to host FREE patient/caregiver symposium March 2

The 2nd annual Alabama Rare Disease Patient/Caregiver Symposium will take place March 2, 2019 in Birmingham, Ala.  At this free symposium, presented by Alabama Rare, Children’s of Alabama, Rare Disease Day and UAB Medicine, attendees will break down the process of diagnosing a genetic and non-genetic rare disease; discuss what is involved in finding approved and […]

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Rare Disease Day 2017 video available

The 2017 Rare Disease video is now available! Rare Disease Day is held on the last day of February every year to raise awareness of rare diseases. February 28 marks the tenth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organizations from countries and regions all over the […]

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