News
Quarterly Newsletter (9/30)
Click Here to View on Mobile Click Here to View on Mobile- Robert Glenn
YBRP in Pharmacy Times: The Journey of Commitment to Ultra-Rare Disease Patients
YBRP gets a shout out in this great article by Chris Adams of Cydan, one of the amazing speakers at the 2019 Family Meeting. The article discusses the important role of parent led organizations and how the biotech and pharmaceutical industries can impact rare disease communities just like ours. (originally published August 2019)
- Paula Tyson
- Tags: news patient organizations pharmacy rare disease
SPARK: The Tyson Family Story
In this video, SPARK for Autism showcases Lillie Tyson and the Tyson family and how finding the underlying genetic diagnosis can be life-changing for both patients and their families (originally published February 2019).- Paula Tyson
SPARK: The Linde Family Story
In this video, SPARK for Autism tells the story of Shandal Linde and the Linde family. Shandal's mom discusses their journey and finally finding hope after their 26 year search for a diagnosis (originally published February 2019).- Paula Tyson