New England Regional Genetics Group

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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/

Affordable Medical Technologies for t...

Affordable Medical Technologies for the World

Dr. Kris Olson of the Consortium for Affordale Medical Technology (CAMTech) of Mass. General Hospital explains the goals of their forthcoming Global Cancer Information Hack-a-thon, taking place end of February in Boston. Click to hear the interview

DFHCC Cancer Genetics Conference

DFHCC Cancer Genetics Conference

The Dana Farber/ Harvard Cancer Center presents its first ever conference on the genetics of cancer April 9 at the Jimmy Fund Auditorium, beginning at 7 AM. To hear the interview with organizer Lindsay Kipnis, MS CGC click here. To register, click this link: https://dfcicancergcconference.eventbrite.com

Addressing Gaps in Genetic Services:

Addressing Gaps in Genetic Services:

Webinar presented by the Genetic Alliance, February 2, 2016, 1-2 EDT The needs of individuals and families with genetic conditions are significant and complex, and yet, there is limited funding and workforce to support them. This session will explore models developed by the Regional Support Service Model Workgroup(link is external) that could address gaps in […]

God, Malaria, and Wolverine Claws

God, Malaria, and Wolverine Claws

Harvard professor George Church speaks with Stephen Colbert on Late Night about gene editing.  Read the report on StatNews with an explanation about CRISPR See the video, with the segment with Church beginning at minute 33.  

Rare Disease Day at the Massachusetts...

Rare Disease Day at the Massachusetts State House

NERGG will participate in an event on Monday, February 29, 11 AM to Noon, in the Great Hall of the Massachusetts State House.  Other events are planned throughout New England and in fact the world!  See http://www.rarediseaseday.us/events/locations/ and use the FILTER to limit the listing to one state. This Massachusetts event is organized and sponsored […]

Local Mom fights rare brain disorder

Local Mom fights rare brain disorder

Katie Brandt, a mother from West Bridgewater, is taking an active role in fighting a rare brain disorder that causes progressive dementia.  Katie is one of the committee planning the MassBio Rare Disease Day event. Read the story

Should I go to a Patient Support Conf...

Should I go to a Patient Support Conference?

What happens at a patient support conference? Is it worthwhile to go, or will it be stressful?  Carla talks with Robin and Joyce about her own recent experience.  Carla applied to the New England Regional Genetics Group (http://www.nergg.org) for an A. Merrill Henderson scholarship to attend a patient support conference.  This grant enabled her to […]

Why one-third of Hospitals will close...

Why one-third of Hospitals will close by 2020

David Houle and Jonathan Fleece are co-authors of the book The New Health Age: The Future of Health Care in America. Three years ago they co-authored a provocative short blog post in KevinMD, predicting that by 2020 one-third of American hospitals would close. http://www.kevinmd.com/blog/2012/03/onethird-hospitals-close-2020.html They pointed to four factors for this: First, America must bring […]