Rare Disease Day 2017
NKH Focus Group Event 2016
NKH FOCUS GROUP WITH ND STUDENTS
Thanks to the Sarbs and Fitzpatricks for speaking with the students on Friday about Notre Dame and NKH research. Students have a better understanding of the affect that NKH disease has on patients and families. They worked on ways to raise awareness through social media and developed a facebook page to advertise this event. Good Job ND students!
Thank you to Pat and Lynda for sharing their story of the Sarb’s long standing history with Notre Dame starting with Father Sorin and now working with Dr. Haldar and CRND staff on NKH research.
Mary and John Fitzpatrick were gracious to share their family experiences with caring for a child with NKH and how they are raising funds for research through “Fiona and Friends” through the sale of wristbands $3 each and all proceeds go to this fund for NKH Research.
For more details on this event, please visit: https://www.facebook.com/events/181159685578035
Chipotle Fundraiser 2016, RareND Club