Maryland State Ambassador for NORD brings her passion for patient advocacy for the rare disease community including her daughter known as #EmmaStrong.
All in Interview
Maryland State Ambassador for NORD brings her passion for patient advocacy for the rare disease community including her daughter known as #EmmaStrong.
A mobile and cloud-based app that helps people with chronic, serious and rare health concerns better manage their health journeys.
Author Laura Kieger and her son, Dr. Alexander Kieger, share their family’s courageous, century-long struggle with a rare genetic cancer syndrome.
A community for telomere biology disorders discusses dyskeratosis congenita.
DTC tests (23andMe, Ancestry etc.) versus medical grade testing, and My Gene Counsel’s impact in genetic testing.
The power of whole genome sequencing for patients with undiagnosed diseases.
Patient advocate shares advice from her genetic testing/counseling and breast cancer journey.
Recap of CT’s event and interviews with Angelman Syndrome and ALD patient advocates
Discuss red flags for inherited cardiovascular disease, genetic cascade screening, prevention/risk reduction and notifying at-risk relatives of patients.