NORD’s Advice on COVID-19: You’re Stronger Than You Think
First, the bad news: If you’re one of the 30 million or so Americans with a rare disease, you probably have lower immunity to ... Read more
Updates
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A 10-minute Walk, and a Purr That Changed My Life
Thursday, Oct. 17, 2019, started off like most weekdays for me. Working in consulting, there are always ebbs and flows. Some days I’m extremely ... Read more -
The Importance of Having ‘Emotional Vitamins’
I can’t stand dogs. They bark a lot. They smell. They require a lot of attention. They tend to whine when I’m on the ... Read more -
AMT-130 Gene Therapy Trial Postpones Treatments Amid COVID-19 Pandemic
Treatment in a U.S.-based Phase 1/2 clinical trial evaluating uniQure‘s gene therapy AMT-130 in people with Huntington’s disease has been temporarily postponed in ... Read more -
Pain Management Often Neglected in Huntington’s, Researchers Say
The uncontrolled jerking and writhing movements associated with Huntington’s disease are well known, along with cognitive decline. But doctors who treat Huntington’s patients are ... Read more
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NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum
The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 ... -
Saying ‘Yes, Yes!’ to the Power of Words
I wasn’t expecting to be brought to tears when I heard motivational speaker Lisa ... -
Celebrating a Year of Being Part of a Courageous Community
This week marks a year since I started writing my column, “A Family Tradition.” ... -
‘Our Odyssey’ Nonprofit Connects Young Adults Who Have Rare Diseases
As a high-school student in the suburbs of Boston, Seth Rotberg watched his mother’s ... -
Global Rare Disease Group’s Focus: 1,000 New Therapies by 2027, Despite COVID-19
Even with the coronavirus pandemic ravaging Europe and much of the world, patient advocate ... -
Coronavirus Has Affected Everyone’s Lives
For many people I know, including me, COVID-19 started out as a joke. It ...
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Blocking 2 Enzymes Seen to Reduce Nerve Cell Loss in Fruit Fly Model of Huntington’s
News
A collaboration between researchers at the University of Leicester, U.K., and the University of Maryland School of Medicine, Baltimore, may lead to a way of reversing some symptoms of neurogedenerative diseases, like Huntington’s, by blocking two specific enzymes of the kynurenine ... Read more