Heather’s Story: Hope Is The Fuel We Run On #PURASyndrome

Heather Bowie

Heather Bowie shares the story of her son Aidan and his rare disorder known as PURA Syndrome in this week’s guest post. Read more about Aidan on his mother’s blog at Family Synapse http://familysynapse.com . For information about sponsoring or attending the PURA Syndrome Conference June 23-25, 2017 in Philadelphia,  visit the PURA Syndrome Foundation website at https://www.purasyndrome.org/conference17. Also … Read more>>

Sarah’s Stanford MedX Ignite! Talk On Acknowledging Needs Of Your Caregiver

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Stanford is home to Medicine X (MedX), where the philosophy is that everyone–including patients, caregivers and family members–are equal stakeholders in medicine with their own expertise and valuable stories to share. By creating a culture in which everyone’s voice is trusted and respected, real change can take place in healthcare and medicine. MedX ePatient Ignite! … Read more>>

Join Us in Making the Voice of Rare Disease Patients Heard

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By Abbe Steel, CEO HealthiVibe, LLC Today, February 29, is Rare Disease Day.  It’s an opportunity for all of us to come together to raise awareness of approximately 7,000 rare diseases, which, together, affect tens of millions of people worldwide. This year’s slogan, “Join Us in Making the Voice of Rare Diseases Heard,” puts a … Read more>>

Raising Awareness: Rare Disease Day 2015

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Rare Diseases Run the Gamut From loss of eye sight to some of the deadliest forms of cancer, people around the globe are battling conditions for which there are often no effective therapies. There is strength in numbers, and those who are diagnosed need the understanding and compassion of the rest of us. We need … Read more>>