New England Regional Genetics Group

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Rare Disease Day is February 28, 2017

Rare Disease Day is February 28, 2017

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.

Turkeys remind us …

Turkeys remind us …

NERGG's annual meeting, on the first weekend following Thanksgiving!  December sneaks up quickly … Register now if you have not already done so, and be sure to join us!  We are counting on you!

Meet our Exhibitors

Meet our Exhibitors

 Our Precision Medicine conference will be held December 1-2, 2016, in Woburn, Massachusetts.  We hope you will join us!  In addition to a terrific program, we will have a fascinating room filled with exhibits of products to enhance your practice. Be sure to visit and support our Exhibitors.

Can you CANNEW?

Can you CANNEW?

Two weeks to go!  The NERGG Conference is almost here.  Can you CANNEW?  We would love to hear about an interesting case for discussion in Woburn.  Submission deadline has been extended.  We hope to see you soon!   Click here for conference details.

Telegenetics Training Aug 2

Telegenetics Training Aug 2

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 […]

Join Us May 6!

Join Us May 6!

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 […]

Complex Diseases April 30

Complex Diseases April 30

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 […]

New Study of Nieman Pick Type C

New Study of Nieman Pick Type C

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 sophia.kon@childrens.harvard.edu if you are interested in participating. Click here for the IRB-approved recruitment letter Sophia Kon Research Coordinator […]

A big THANK YOU!

A big THANK YOU!

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 […]

Making the Case for Newborn Screening...

Making the Case for Newborn Screening for ALD

 Would earlier diagnosis make a difference in the outcomes for children with ALD? What if we could change the diet in infancy, as we do for PKU? New York and six other states are now screening newborns.  Will Massachusetts join them?  http://www.powerfulpatient.org/aldconnect/