Help educate policy makers. Share your family’s story before October 31, 2015, and be eligible to win a $50 Target gift card. 2015-10-negc-survey
On the Powerful Patient, Joyce and Robin speak with Patricia Weltin about the difficult road to diagnosis for her daughters, and what she has learned that can help others. See http://www.powerfulpatient.org/our-diagnostic-odyssey/
Joyce Graff represented NERGG on a panel at the recent World Congress Patient Engagement Summit, along with Dr. Peter Elias and Nancy Finn. Joyce made the point that patients are looking to their healthcare professionals for “personalized wisdom” about how to manage their health. See http://www.worldcongress.com/events/HL15021/
Spotlight on Gaucher. International Gaucher Disease Patient Ambassador Emma Rooney explains why she is a Gaucher story-teller, where she gets her inspiration from and provides tips on how to develop your own story.
by Jennifer Walsh Schwab Driving into work on Tuesday morning I was listening to my favorite morning radio station, thinking about what the day would bring. I had two patients scheduled before lunch, both referred to discuss their family history of early onset breast cancer. Almost as if the DJ could hear my thoughts she announced “Angelina […]
by Mark Dunning My daughter Bella has a genetic disorder known as Usher syndrome type 1b. She is deaf and she is losing her vision due to retinitis pigmentosa. She also has vestibular issues caused by Usher syndrome. Thankfully the end of Usher syndrome, of vision loss and hearing loss and vestibular issues, is inevitable. Just look at […]