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Supporting Rare Disease Day 2022

February 25, 2022 Jennifer Dykeman 2 Comments

by Jennifer Dykeman, MMSc Candidate, 2023 February 28th is Rare Disease Day! In the United States, a disease is defined as rare if it affects less than 200,000 people. It… CONTINUE

Filed Under: Advocacy, Advocacy Alliance, Events, News Tagged With: advocacy, Find a Genetic Counselor, GARD, Genetic and Rare Disease Information Center, National Organization for Rare Diseases, National Society of Genetic Counselor, NIH, NORD, NSGC, patient services, Rare Disease Day

ThinkGenetic Supports Rare Disease Day – Show Your Rare

February 28, 2018 Ruth O'Keefe 1 Comment

ThinkGenetic is proud to support Rare Disease Day. Why? Because we’re a part of your community! We live and breathe the struggles and triumphs firsthand. Do you know the ThinkGenetic… CONTINUE

Filed Under: Education, Events Tagged With: Brian M. Ashe, Dave Jacob, Katie Brandt, Massachusetts General Hospital, MassBio, MGH, My Rare, National Organization for Rare Disorders, NORD, Rare Disease Day, Ruth O'Keefe, Show Your Rare

Rare Diseases Day 2017: The Cause & Celebrations

February 27, 2017 thinkgenetic Leave a Comment

Organized internationally by The European Organization (EURORDIS) for Rare Disorders and supported in the United States by the National Organization for Rare Disorders (NORD) and Global Genes, the last day… CONTINUE

Filed Under: Events Tagged With: #RareDiseaseDay, EURODIS, NORD, Rare Disease, Rare Disease Day

From Submarines to Genetic Diseases, Finding Answers Across the Decades

October 13, 2016 Len Barker Leave a Comment

submarine

The year is 1983.  I had just finished Navy Nuclear Power School, Ronald Reagan was president and the fledgling National Organization for Rare Disorders (NORD) helped pass the Orphan Drug… CONTINUE

Filed Under: News Tagged With: EveryLife Foundation, FDA, FDASIA, genetic disease, Len Barker, medication, NORD, orphan drug, Orphan Drug Act

ThinkGenetic Founder, Dawn Laney, to be honored at 2016 Rare Impact Awards on May 17th

April 13, 2016 Ruth O'Keefe

Dawn Laney at NORD Rare Impact Awards

Coming this May, NORD is hosting the 2016 Rare Impact Awards to bring together the rare disease community and to honor and celebrate outstanding achievements. During the event NORD will recognize the… CONTINUE

Filed Under: Events, News Tagged With: #rareimpact, Dawn Laney, NORD, Rare Impact Award, Ruth O'Keefe, ThinkGenetic

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