Co-Founder/CEO of Onevoice shares how his new community building software solution supports the rare disease community.
All in Rare Disease
#52 Charcot Marie Tooth Interview
Patient advocates Bernadette Scarduzio and Allison Moore share about CMT, their documentary and the Hereditary Neuropathy Foundation.
#41 Rare Disease Day 2016
February 29th is the rarest day of the year and that means it's Rare Disease Day! Throughout the world NORD (The National Organization of Rare Diseases) has hosted Rare Disease Day events. I attended the Connecticut Rare Disease Day at the State House in Hartford and interviewed a few of the presenters including Jackie and Eloise Stager, founders of JaxLegacy, John Hopper, the director of the Fibrolamellar Cancer Foundation and Maddie Shaw, leader of Maddie's Herd.
#39 Sun Kissed & Kardashian's Genetic Testing
On a recent episode of the Keeping Up With The Kardashians, the family went through genetic testing, but what did the episode leave out or get wrong? I review the documentary Sun Kissed: One Gene Exposes a Nation's Dark Past, about a family who has children with an extremely rare genetic disorder, Xeroderma Pigmentosum.
#28 Interview with Maddie's Herd
Maddie Shaw is an active advocate with the Immune Deficiency Foundation and has a Primary Immune Deficiency Disorder (PI). She is also the Founder & Leader of Maddie’s Herd.
#22 Rare Disease Day 2015
Presentations at the Rare Disease Day 2015 are recapped. Presentors include Dr. Anton Alerte, Juliet and Tara Lynn, Dr. Caroline Dealy and Ethan Talbot.
#21 Rare Diseases Day 2015
Attend the Rare Diseases Awareness Event 2015 at UCONN Health Center on February 25th. Sophia Walker explains the celebration of individuals who have rare diseases and the many researchers and physicians who are fighting to find cures for these conditions.
#5 Huntington's Disease
Lessons explore Huntington's Disease and genetic testing of Huntington's and the field of bioinformatics