Category: Rare Diseases
Updating the Advocacy Activities of Robin and Mike
by Michael Lawing | Jan 19, 2018 | Advocating for Yourself, Cancer, in general, Chronic Fatigue Syndrome (CFS), Empowering Yourself, Finding others with the same challenges, Getting a Diagnosis, Kidney Cancer, Managing the System, Managing Your Health, Managing Your Life, Podcast, Rare Diseases, Teamwork with doctors | 0 |
Helping your baby with metabolic disorders
by JoyceGraff | Jan 5, 2017 | Conditions, Lysosomal Storage disorders, Podcast, Rare Diseases | 0 |
Dealing with Complex Medical Disorders
by JoyceGraff | Apr 5, 2016 | Empowering Yourself, Mitochondrial disease, Paraganglioma, Pheochromocytoma, Podcast, Rare Diseases | 0 |
Cari Cornish and Special Education Law
by JoyceGraff | Apr 14, 2015 | Advocating for Yourself, Metabolic disorders, Podcast, Rare Diseases | 2 |
Stephanie Sugars and the PJS Community
by JoyceGraff | Jul 10, 2014 | Gastro-intestinal polyps and tumors, Getting a Diagnosis, Podcast, Rare Diseases | 0 |
Diagnosing a Rare Disease – a Case from Ireland
by JoyceGraff | Apr 24, 2014 | Brain tumor, Empowering Yourself, Kidney Cancer, Podcast, Rare Diseases, VHL von Hippel-Lindau | 0 |
Braeden’s Challenges
by JoyceGraff | Mar 1, 2014 | Advocating for Yourself, Birth defects, Blog, Empowering Yourself, Finding others with the same challenges, Healthcare Systems and Insurance, Promoting Research, Rare Diseases, Teamwork with doctors | 0 |
Ray Flynn, former Mayor of Boston, fights with passion for his grandson’s health and quality of life. Braeden has a rare condition that presents him and his family with significant challenges.
Rare Disease United – One in Ten is affected
by JoyceGraff | Jan 23, 2014 | Empowering Yourself, Podcast, Rare Diseases | 0 |
Patricia Weltin speaks with Mike and Joyce about plans for Rare Disease Day 2014. Rare Disease United focuses on raising awareness among the general public in her state, and helping to facilitate the gathering of people affected by rare diseases so that they can support one another.
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