#41 Rare Disease Day 2016
March 1st, 2016 at 1pm ET using the hashtag, #abcDRBchat. Find events near you using NORD's worldwide event locator. #41 Rare Disease Day 2016 #41 Rare Disease Day 2016 the Connecticut Rare Disease Day at the State House in Hartford and interviewed a few of the February 29th is the rarest day of the year and that means it's Rare Disease Day! Throughout the Fibrolamellar Cancer Foundation and Maddie Shaw, leader of Maddie's Herd. Join the rare disease tweetchat rare diseases awareness event world NORD (The National Organization of Rare Diseases) has hosted Rare Disease Day events. I attended
#22 Rare Disease Day 2015
NORD-INFOGRAPHIC-80-percent-of-rare-diseases-404x404-RDD-1-21-15-no-reference1.png Presentations at the Rare Disease Day 2015 are recapped. Presentors include Dr. Anton Alerte rare disease rare diseases awareness event , and rarediseases.org for more information. #22 Rare Disease Day 2015 #22 Rare Disease Day 2015
#21 Rare Diseases Day 2015
Attend the Rare Diseases Awareness Event 2015 at UCONN Health Center on February 25th. Sophia #21 Rare Diseases Day 2015 Walker explains the celebration of individuals who have rare diseases and the many researchers and , rarediseaseday.org and rarediseases.org for more information. #21 Rare Diseases Day 2015 rare disease rare diseases awareness event share their experiences and learn about rare diseases! Everyone is welcome and the free event is
#77 Rare Disease Day 2018
events held worldwide to raise awareness. The theme for this year's Rare Disease Day is "Research rare diseases out the other episodes about rare diseases including previous Rare Disease Days. #77 Rare Disease Day 2018 7,000+ rare diseases and the 30 million Americans who are affected by a rare disease(s). There were rare diseases. For more information about Rare Disease please visit NORD’s rarediseases.org and check February 28th, 2018 was Rare Disease Day! Rare Disease Day is an opportunity to raise awareness for rare disease extremely rare disease rare disease day #77 Rare Disease Day 2018 rare disease research
#63 Rare Disease Day 2017
with Michelle Cotton, a patient advocate and mom of a child with a rare disease. The other interview is means 1 in 10 people in America are affected. Over half of those with a Rare Disease are children, and rare disease support group rare disease social media #63 Rare Disease Day 2017 about 30% will not survive past 5 years old (NIH). We are aware of over 7,000 rare diseases and rare disease rare diseases awareness event rare disease support and Rare Diseases. Some facts about Rare Diseases, 30 million Americans have a Rare Disease which Today is Rare Disease Day! I attended the National Organization for Rare Disorders' (NORD) event in
#75 Eden Lord on My City Med
Building. Not in Connecticut? Find a local Rare Disease Day event here. #75 Eden Lord on My City Med pursuing legislation to advance rare disease research. Attend a Rare Disease Day 2018 event! If you are in rare diseases We are kicking off Rare Disease Month, which leads up to Rare Disease Day (February 28th, 2018). My navigate the healthcare system. Eden is a mom to kids with rare diseases and during the episode, she shares rare disease Rare Disease advocate and caregiver shares on the resources she has created. rare disease day parents of kids with rare diseases Rare Disease Day
#67 Daniel DeFabio on Disorder: The Rare Disease Film Festival
addresses USP7 mutation Daniel has also written about the rare disorder Menkes Disease for The Mighty Daniel speaks about the films to be screened at the festival and the film he produced about his son's rare disease, Menkes Disease. Enthusiasm”.   To keep updated with Disorder: The Rare Disease Film Festival, like them on Facebook. #67 rare disease support group Daniel DeFabio on Disorder: The Rare Disease Film Festival Daniel DeFabio is co-director of Disorder: The Rare Disease Film Festival. This event is a first of with a rare disease. The film festival has support from some of the leading organizations in rare rare disease films rare disease rare diseases awareness event Disorder: The Rare Disease Film Festival #67 Daniel DeFabio on Disorder: The Rare Disease Film Festival
#60 Dan Donovan on Onevoice
was acquired by United BioSource Corporation. His introduction to the world of rare disease began in involved in rare disease — welcoming all who participate in diagnosis, treatment, research, caregiving rare disease support group rare disease community rare disease social media Co-Founder/CEO of Onevoice shares how his new community building software solution supports the rare disease community. solution. Onevoice provides a powerful encouragement and knowledge platform for all rare disease stakeholders rare disease Dan Donovan is the Co-Founder and CEO of Onevoice, a rare disease community building software rare disease support
#68 Bo Bigelow on USP7-Related Disorders
-founded Maine Rare. He was the State Leader for Rare Disease Day in Maine for NORD (the National rare diseases Rare Diseases Maine resource " will be played during the Rare Disease Film Festival in Boston October 2rd through October 3rd Rare Disease Day Maine rare disease parents of kids with rare diseases
#70 Heather Z on Cowden Syndrome
rare disease helps others with hereditary cancer syndromes and rare diseases. Hereditary cancer syndromes evaluate
#6 Jackson Laboratories for Genomic Medicine Opening
as prenatal and newborn genome sequences as well as ultra-rare genetic diseases. A quick news story
#7 Gene Therapy
a gene mutation that causes rare premature aging disease called dyskeratosis congenita. Long-term
#82 Smith Family Clinic on Whole Genome Sequencing
misdiagnosed disease, and are considering genetic testing - specifically, whole genome sequencing of clinical experience. He sees patients and families who are struggling with a rare undiagnosed or
About
disease community and has worked collaboratively with the National Organization for Rare Disorders to and received a 2012 Podcast Award nomination. She is passionate about advocating for the rare
See more