Updates

News, syndicated Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients
News, syndicated Pandemic Won’t Stop Rare Disease Day on Feb. 28
News, syndicated NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns
News, syndicated COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say
News, syndicated NORD’s Caregiver Respite Program Continues Through Pandemic
News Seizure-causing Disorders Can Take Emotional Toll on Siblings
News, syndicated NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum
News, syndicated NORD Push for Rare Disease Advisory Councils Focus of Dec. 16 Public Meeting
News, syndicated Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe
News, syndicated Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry
News, syndicated NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits
News, syndicated UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner
News Epidiolex Triggers Lithium Toxicity in Boy With LGS, Case Study Reports
News, syndicated Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say
News, syndicated Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos
News, syndicated Same But Different Photo Contest Celebrates People With Rare Diseases
News, syndicated Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input
News, syndicated EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US
News, syndicated New Streaming Channel Showcases Rare Disease Films
News, syndicated National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US
News, syndicated Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic
News MicroRNA-based Gene Therapy Found to Improve Survival in Mouse Model
News Coalition Will Address Racial Disparities in Rare Disease Communities
News, syndicated COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say
News, syndicated Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe
cystic fibrosis, News, syndicated Video Games Connect Chronically Ill Children Isolated at Home, Hospital
News, syndicated Unity and EU-wide Efforts Focus of Online Rare Disease Meeting
News, syndicated Rare Diseases Clinical Research Network Opens Online Survey on COVID-19
News, syndicated Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say
News, syndicated NORD Opens COVID-19 Financial Aid Program for Rare Disease Community
Just Published, News Global Rare Disease Group’s Focus: 1,000 New Therapies by 2027, Despite COVID-19
News Pediatric Rare Disease Therapies Increase, But Most Repurposed, Study Finds
News Video: BioNews’ Social Media Campaign Highlights #WhatMakesMeRare
News Elsevier Opens Books, Review Articles to Rare Disease Researchers Starting Feb. 29
News Advice on Starting Nonprofit Groups for Rare and Other Diseases Focus of NORD Webinar
News Patients, Supporters Worldwide Recognizing Rare Disease Day 2020
News FDA Efforts to Bring Patients into Treatment Decisions Focus of NORD Webinar
News With Post-Brexit Move to Amsterdam Complete, EMA Renews Rare Disease Focus
News Epidiolex-Clobazam Interaction May Explain Reductions in Seizures, Study Suggests
News HHS Secretary Alex Azar Touts White House Efforts to Cure Rare Diseases
News Ella the Jellyfish Becomes First Amazon Alexa Skill to Offer Fun and Support for LGS Children
News NICE Favors Adding Epidyolex, Cannabidiol Oral Solution, to NHS for Lennox-Gastaut Patients in England
News Rare Disease Film Festival Highlights Patient and Researcher Unity
News Onfi as Add-on Lennox-Gastaut Therapy Lowers Drop Seizure Rates, Study Reports
News Enrollment Completed in Phase 3 Trial Testing Fintepla to Treat Seizures in Lennox-Gastaut Syndrome Patients
Just Published, News Long-term Treatment With Soticlestat Induces Sustained Reduction in Seizure Frequency in Rare Epilepsies, Initial Data Show
News Epidyolex, Oral CBD, Approved in Europe to Treat Lennox-Gastaut and Dravet Syndrome Starting at Age 2

February 19, 2021February 17, 2021
Taking Time to Acknowledge Our Efforts as Parents and Caregivers

As humans, and especially as caregivers, we do not give ourselves enough credit. It’s a widely ... Read more
February 18, 2021February 18, 2021
Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according ... Read more
February 12, 2021February 10, 2021
Brian Is a Happy Little Man

Little Brian is awesome. As I take this time to reflect on the totality of the ... Read more
February 11, 2021February 11, 2021
Pandemic Won’t Stop Rare Disease Day on Feb. 28

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on ... Read more
February 5, 2021February 3, 2021
I’m Ready to Embrace My Emotions as an LGS Caregiver

No matter how cliché it sounds, if there’s anything I can get across as a Lennox-Gastaut ... Read more

uncategorized

International Epilepsy Day Shines Spotlight on Brain Disorder Affecting Millions
February 4, 2021February 4, 2021
International Epilepsy Day (IED), falling on ...
News, syndicated

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns
February 3, 2021February 3, 2021
While progress was made last year ...
uncategorized

Jazz Acquires GW Pharma and Epidiolex, Other Potential Cannabinoids
February 1, 2021February 11, 2021
Jazz Pharmaceuticals announced the signing of a ...
uncategorized

Study Reveals Molecular Details of Epidiolex Action
January 28, 2021January 28, 2021
Cannabidiol (CBD) — the active ingredient ...
Columns, Into the Unknown – a Column by Jendi Solka

This Is Why I Had to Sign Off
January 28, 2021January 26, 2021
It’s good to be back and ...
News, syndicated

COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say
January 27, 2021January 27, 2021
The two COVID-19 vaccines that recently ...

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NORD’s Caregiver Respite Program Continues Through Pandemic
January 21, 2021January 21, 2021
Caring for a loved one with ...
Telehealth Visits Viewed Favorably in French Study for Children With Epilepsy
January 21, 2021January 21, 2021
Telehealth visits — conferencing with patients ...
Forging New Routines After Sudden Changes
January 15, 2021January 13, 2021
Seizure-causing Disorders Can Take Emotional Toll on Siblings
January 14, 2021January 14, 2021
NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum
January 11, 2021January 11, 2021
FDA Approves Generic of Banzel as Add-on Seizure Therapy
January 7, 2021January 7, 2021

Giving Thanks During Difficult Times
December 4, 2020December 3, 2020
Thanksgiving just passed, and I’m back ...
NORD Push for Rare Disease Advisory Councils Focus of Dec. 16 Public Meeting
December 3, 2020December 3, 2020
Epidiolex’s Anti-Seizure Activity Not Affected by Clobazam, Review Study Finds
December 3, 2020December 3, 2020

News, syndicated

Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe
November 26, 2020November 26, 2020
The first wave of COVID-19 in Europe ...
uncategorized

Epidiolex-treated LGS Boy Has No Seizures, Near-normal EEG Pattern, Case Study Reports
November 19, 2020November 19, 2020
Adding Epidiolex, an oral cannabidiol medication, to ...
News, syndicated

Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry
November 19, 2020November 19, 2020
Leaders in the U.S. rare disease ...
Columns, Redefining Normal – a Column by Brian Solka

Brian Turns 6!
November 13, 2020November 12, 2020
Brian’s birthday party is on Sunday, ...
uncategorized

Epilepsy Awareness Month Calls Attention to Seizure Disorders, Dravet, LGS
November 12, 2020November 12, 2020
National Epilepsy Awareness Month is underway, ...
uncategorized

Inovelon/Banzel Seen to Treat LGS Seizures Without Hindering Cognition
November 12, 2020November 12, 2020
The add-on anti-seizure therapy Inovelon (rufinamide) ...
Columns, Into the Unknown – a Column by Jendi Solka

The Risks LGS Caregivers Take
November 6, 2020November 4, 2020
In the spirit of Halloween and ...
News, syndicated

NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits
November 5, 2020November 5, 2020
The National Organization for Rare Disorders ...
Columns, Redefining Normal – a Column by Brian Solka

The World Keeps on Turning, Even in the Midst of Tragedy
October 30, 2020October 28, 2020
When Brian’s seizures returned as Lennox-Gastaut ...

Updates

Taking Time to Acknowledge Our Efforts as Parents and Caregivers

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

Brian Is a Happy Little Man

Pandemic Won’t Stop Rare Disease Day on Feb. 28

I’m Ready to Embrace My Emotions as an LGS Caregiver

International Epilepsy Day Shines Spotlight on Brain Disorder Affecting Millions

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

Jazz Acquires GW Pharma and Epidiolex, Other Potential Cannabinoids

Study Reveals Molecular Details of Epidiolex Action

COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say

Subscribe to our mailing list

NORD’s Caregiver Respite Program Continues Through Pandemic

Telehealth Visits Viewed Favorably in French Study for Children With Epilepsy

Forging New Routines After Sudden Changes

Seizure-causing Disorders Can Take Emotional Toll on Siblings

NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum

FDA Approves Generic of Banzel as Add-on Seizure Therapy

Brian’s Letter to Santa

Fintepla Found to Safely Reduce LGS Seizure Frequency

How to Decide the Next Step?

New Hard-Stop Alert for Clinicians May Reduce Keto Diet Prescription Errors

Giving Thanks During Difficult Times

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

Epidiolex’s Anti-Seizure Activity Not Affected by Clobazam, Review Study Finds

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

Epidiolex-treated LGS Boy Has No Seizures, Near-normal EEG Pattern, Case Study Reports

Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry

Brian Turns 6!

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

Inovelon/Banzel Seen to Treat LGS Seizures Without Hindering Cognition

The Risks LGS Caregivers Take

NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits

The World Keeps on Turning, Even in the Midst of Tragedy