December 1, 2020December 1, 2020
NORD Push for Rare Disease Advisory Councils Focus of Dec. 16 Public Meeting
News, syndicated
To empower and equip members of the rare disease community to engage state leaders in matters of importance to ... Read more
December 1, 2020November 30, 2020
For Our Family, Advent Is a Time of Needed Rest
Columns, The Journey to the Truth – a Column by Meagan Cheney
I come from a diverse Christian background. My mom is Mormon, while my dad was raised Episcopalian. I’ve dabbled ... Read more
December 1, 2020December 1, 2020
UK Survey Examines Effects of COVID-19 on Dravet Patients
News
While Dravet syndrome patients don’t appear to be at increased risk of severe COVID-19 complications, more study is needed ... Read more
November 26, 2020November 26, 2020
Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe
News, syndicated
The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with ... Read more
November 24, 2020November 20, 2020
Finding Something to Be Thankful for in the Midst of 2020
Columns, The Journey to the Truth – a Column by Meagan Cheney
Thanksgiving is one of my top two favorite holidays. But when I was a kid, my family did something ... Read more
November 24, 2020November 24, 2020
1st Patient Dosed in Phase 2 Study of EPX-100 for Dravet Syndrome
News
The first patient has been successfully dosed in a Phase 2 clinical trial testing Epigenix Therapeutics’ EPX-100 (clemizole) as ... Read more
November 17, 2020November 17, 2020
Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry
News, syndicated
Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how ... Read more
November 17, 2020November 16, 2020
When Special Needs Moms Get Sick
Columns, The Journey to the Truth – a Column by Meagan Cheney
Moms don’t get sick days. I remember my mom telling me that one day when I called in desperation. ... Read more
November 17, 2020November 17, 2020
Specific ICD-10 Codes for Dravet Ultimately Could Improve Patient Outcomes
News
Dravet syndrome now has its own global health statistics codes — known as “ICD-10” codes — that potentially could ... Read more
November 10, 2020November 10, 2020
Epilepsy Awareness Month Calls Attention to Seizure Disorders, Dravet, LGS
News
National Epilepsy Awareness Month is underway, with a variety of events and activities aimed at calling attention to diseases ... Read more
November 5, 2020November 5, 2020
NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits
News, syndicated
The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in ... Read more
November 3, 2020October 30, 2020
Seeing Epilepsy Awareness in a New Light
Columns, The Journey to the Truth – a Column by Meagan Cheney
I have a confession. I used to hate Epilepsy Awareness Month. Maybe it’s because our daughter Austen’s first seizure ... Read more

December 1, 2020December 1, 2020

NORD Push for Rare Disease Advisory Councils Focus of Dec. 16 Public Meeting

News, syndicated

To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders ... Read more

December 1, 2020November 30, 2020

For Our Family, Advent Is a Time of Needed Rest

Columns, The Journey to the Truth – a Column by Meagan Cheney

I come from a diverse Christian background. My mom is Mormon, while my dad was raised Episcopalian. I’ve dabbled with nondenominational, Baptist, and Pentecostal churches in my own search ... Read more

December 1, 2020December 1, 2020

UK Survey Examines Effects of COVID-19 on Dravet Patients

News

While Dravet syndrome patients don’t appear to be at increased risk of severe COVID-19 complications, more study is needed about potentially adverse effects of prolonged social distancing and other ... Read more

November 26, 2020November 26, 2020

Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe

News, syndicated

The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with rare diseases, negatively affecting their health and well-being, according to ... Read more

November 24, 2020November 20, 2020

Finding Something to Be Thankful for in the Midst of 2020

Columns, The Journey to the Truth – a Column by Meagan Cheney

Thanksgiving is one of my top two favorite holidays. But when I was a kid, my family did something at the Thanksgiving dinner table that I absolutely hated. It ... Read more

November 24, 2020November 24, 2020

1st Patient Dosed in Phase 2 Study of EPX-100 for Dravet Syndrome

News

The first patient has been successfully dosed in a Phase 2 clinical trial testing Epigenix Therapeutics’ EPX-100 (clemizole) as an add-on therapy for children with Dravet syndrome. “We are ... Read more

November 17, 2020November 17, 2020

Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry

News, syndicated

Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and patient registry. They shared about ... Read more

November 17, 2020November 16, 2020

When Special Needs Moms Get Sick

Columns, The Journey to the Truth – a Column by Meagan Cheney

Moms don’t get sick days. I remember my mom telling me that one day when I called in desperation. The Army had recently moved us to California for my ... Read more

November 17, 2020November 17, 2020

Specific ICD-10 Codes for Dravet Ultimately Could Improve Patient Outcomes

News

Dravet syndrome now has its own global health statistics codes — known as “ICD-10” codes — that potentially could result in improved patient outcomes and enhanced clinical and scientific ... Read more

November 10, 2020November 10, 2020

Epilepsy Awareness Month Calls Attention to Seizure Disorders, Dravet, LGS

News

National Epilepsy Awareness Month is underway, with a variety of events and activities aimed at calling attention to diseases such as Dravet and Lennox-Gastaut syndromes, and to epilepsy in ... Read more