Rare Disease Day amplifies the voice of rare disease patients so that it is heard all over the world. NERGG will participate in the Massachusetts Rare Disease Day 2017 panel in the Great Hall of the Massachusetts State House on February 28th. The event is free, but space is limited. Click here to register.
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The Western States Genetic Services Collaborative has implemented a program to introduce practicing and student genetic counselors to using telegenetics in your practice. The next in-person training date is August 2, 2016, in Tucson, Arizona. The Deadline for applications is July 1. If you are accepted there is no cost to participate. CEUs are provided […]
Don't miss a wonderful day of learning in Danvers May 6! The National Society of Genetic Counselors (NSGC) has authorized New England Regional Genetics Group (NERGG) to offer up to 0.80 CEUs or 8.00 Category 1 contact hours for the event: Whole Exome Sequencing: Opportunities and Challenges. The American Board of Genetic Counseling (ABGC) will […]
Mito New England (MNE) is sponsoring a meeting April 30 to discuss new initiatives at Mass. General Hospital to assist in diagnosis and management of complex medical problems. Dr. Amel Karaa, Dr. Mark Korson, and Tim Boyd from NORD will share their perspectives. This event is open to all affected by complex disease, including but […]
Boston Children’s Hospital is actively recruiting subjects with Neimann Pick Type C for a clinical trial. Please see the trial description at https://clinicaltrials.gov/ct2/show/NCT02534844?term=cyclodextrin&rank=6 and contact Dr. Olaf Bodamer (contact info in the protocol), or study coordinator Sophia Kon at (617) 919-1399 or email@example.com if you are interested in participating. Click here for the IRB-approved recruitment letter Sophia Kon Research Coordinator […]
From Lara Chapelle at EURORDIS: First of all, a big THANK YOU for all of your efforts. Rare Disease Day 2016 was bigger and better than ever before! Key facts and figures! Events around the world! Events were held in 85 countries and regions (all 28 EU countries!) with first time participants: Andorra, Aruba, Indonesia, Libya, Mauritius, Moldova, Tanzania, Tunisia, Uganda and Zimbabwe Hundreds of events organised […]