Subscribe to
this category


A total of 879 posts are filed under Insights
School Bands Together to Raise Money for Genetic Sequencing of Undiagnosed Four-Year-Old
When Mackenzie Nelson celebrated her birthday last month, there was no cake. Instead, the 4-year-old had her favorite treat, a plain and… Continue Reading
Parent of a Medically Complex Child, “I am Always Choosing Between the Lesser of Two Evils”
My son Julian has always been a “sick kid.” He seemed to have infection after infection, picked up every cold that was around and was in… Continue Reading
RARECast: Rare Disease Advocates Push for Incentives to Drugmakers Pulled from Cures Act
  Legislation that would provide incentives to drugmakers to repurpose existing pharmaceuticals as rare disease treatments is once again in… Continue Reading
My Life with Ehlers-Danlos: A Thank You to Social Media Friends
By Tiffany Early The trees outside my window are blooming. My house feels humid, and I’ve sneezed half a dozen times while trying to type… Continue Reading
Chicken Pox Triggers Onset of Symptoms of Spinocerebellar Ataxia Type 7 in Child
By Andrea Downey, Digital Health Reporter by The Sun A FOUR-year-old boy is wasting away in front of his parent’s eyes after chickenpox… Continue Reading
Late Gorham-Stout Disease Patient Honored During Event
By Alyssa Pressler The Dallas community was heartbroken when they it lost Jasmine Malker, a local woman who was… Continue Reading
Parents, Precision Medicine, Genetics and Autism – The Discovery of an Early-Age Biomarker for a Rare Syndrome Highly Linked to Autism
By Sandra Bedrosian Sermone Early diagnosis is key for the management of autism and most children are not diagnosed until their third or… Continue Reading

Follow us on Twitter

Upcoming Events

Sep 14

Rare Patient Advocacy Summit

September 14 @ 8:00 am - 5:30 pm
Sep 14

Rare Partnering 2017

September 14 @ 8:00 am - 5:00 pm
Sep 15

Rare Patient Advocacy Summit

September 15 @ 8:00 am - 4:00 pm
Sep 15

Community Nominated Ceremony and Reception

September 15 @ 4:30 pm - 9:00 pm
Sep 16

Corporate Alliance

September 16 @ 9:00 am - 12:00 pm
Sep 16

Rare Day of Beauty

September 16 @ 12:30 pm - 4:00 pm
Sep 16

Tribute to Champions of Hope

September 16 @ 5:30 pm - 10:30 pm