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Insights

A total of 900 posts are filed under Insights
Learning to Be The Best Patient I Could Be: Growing Up with Homocystinuria
By Danae Bartke I was diagnosed with Homocystinuria in 1995 at the age of 10. We discovered the diagnoses because my younger brother had… Continue Reading
Texas Teen with Rare Disease Gets Wish Granted
Make-A-Wish Foundation volunteers Thursday surprised a 13-year-old Central Texas girl who has a rare disease with news that her wish to go… Continue Reading
Family Hopes to Raise Awareness for Daughter with Neurofibromatosis (NF)
May has been designated as National Neurofibromatosis (NF) Awareness Month and bringing awareness to this rare genetic disease is a personal… Continue Reading
As Her Boys Battle Rare Disease, Mom Drives for a Cure
There are five people in the United States that live with Jansen’s Metaphyseal Chondrodysplasia. Neena Nizar and her two sons, Arshaan and… Continue Reading
RareCAST: Experimental Rare Disease Therapy Wins New FDA Reg Med Designation
  Last month the U.S. Food and Drug Administration granted Enzyvant both Breakthrough Therapy Designation and the newly established… Continue Reading
RARECast: How Rare Disease Patients Can Get their Voices Heard in Drug Discovery and Development
  There is increasing recognition of the important role patients can play by providing their insights into the drug discovery and… Continue Reading
Hope For 16-Year-Old California Boy Fighting Rare Genetic Disease
 By Justine Waldman, SOURCE It is a story about courage, tenacity, and perseverance. It is about parents who are keeping up the fight to… Continue Reading
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