Updates

May 25, 2020May 25, 2020
Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

European authorities must step up efforts to screen babies for a multitude of genetic disorders, a panel of experts suggested during a May 14-15 ... Read more
May 20, 2020May 20, 2020
Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

Eurordis, a Paris-based coalition of national rare disease associations across Europe, hosted its first all-virtual conference, bringing some 1,500 delegates from 57 countries together ... Read more
May 19, 2020May 15, 2020
Myasthenia Gravis Has Made Planning for Motherhood Challenging

Life with myasthenia gravis has taken some dramatic turns and created both challenges and opportunities. One of those dramatic moments was having to decide ... Read more
May 19, 2020May 19, 2020
Thymectomy Seen to Aid Remission in Ocular MG Patients Younger Than 40

People who develop ocular myasthenia gravis (OMG) before age 40 are more likely to go into remission after surgery to remove the thymus (thymectomy), ... Read more
May 12, 2020May 12, 2020
Rituximab Safe and Effective in LOMG, Study Suggests

Treatment with rituximab is safe, provides clinical improvements and enables stopping maintenance therapies in patients with late-onset myasthenia gravis (LOMG), a small study suggests. The ... Read more

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September 28, 2017September 28, 2017

Women with Myasthenia Gravis Report Lower Quality of Life than Male MG Patients, Study Finds

News

Women with myasthenia gravis (MG) have a poorer quality of life than male patients. That’s the conclusion of a study named “Best Abstract Award” winner at the 2017 American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM) Annual Meeting in Phoenix. Specifically, ... Read more

Updates

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

Myasthenia Gravis Has Made Planning for Motherhood Challenging

Thymectomy Seen to Aid Remission in Ocular MG Patients Younger Than 40

Rituximab Safe and Effective in LOMG, Study Suggests

Subscribe to our mailing list

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

Myasthenia Gravis Has Made Planning for Motherhood Challenging

Thymectomy Seen to Aid Remission in Ocular MG Patients Younger Than 40

Rituximab Safe and Effective in LOMG, Study Suggests

Rare Diseases Clinical Research Network Opens Online Survey on COVID-19

Guidelines Published for Managing MG During COVID-19 Outbreak

NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

UCB Acquires Ra Pharma, Adds Zilucoplan to Its MG Pipeline

New MG Cell Model May Best Capture How Autoantibodies Affect Muscles in MG

Soliris Suitable for gMG Patients with Myasthenic Crisis and Thymoma-associated Disease, Study Suggests

NORD’s Advice on COVID-19: You’re Stronger Than You Think

Age Among Factors Affecting Survival in MG Patients with Thymoma Surgery

NORD Partners with ‘Sing Me a Story’ for July 18-20 Living Rare Forum

Global Rare Disease Group’s Focus: 1,000 New Therapies by 2027, Despite COVID-19

I Got Tested for COVID-19 — Here’s What It Was Like

Immunoglobulin Helps by How It Acts on Regulatory T-Cells, Study Finds

Dual Immunoglobulin, Aimovig Therapies Safe for MG, Migraines, Report Says

Fighting to Live During a Nationwide COVID-19 Lockdown

Increasing Expenses for MG Patients In China Suggest Inadequacy of Current Medical Insurance Policies, Study Says

Levels of Certain B- and T-cells Linked to Ocular MG Turning Generalized

Let’s Work Together to Stay Safe During the Coronavirus Crisis

Osteopontin Protein May Worsen MG by Affecting Immune Cells, Study Finds

Complete MG Remission Seen as More Likely in Robot-assisted Thymectomy

Expressing Gratitude: Being ‘Rare’ Has Positive Attributes, Too

HBM9161 Shows Potential to Treat Autoimmune Diseases, Early Data Suggest

Elsevier Opens Books, Review Articles to Rare Disease Researchers Starting Feb. 29

Women with Myasthenia Gravis Report Lower Quality of Life than Male MG Patients, Study Finds

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Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

Myasthenia Gravis Has Made Planning for Motherhood Challenging

Thymectomy Seen to Aid Remission in Ocular MG Patients Younger Than 40

Rituximab Safe and Effective in LOMG, Study Suggests

Subscribe to our mailing list

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

Myasthenia Gravis Has Made Planning for Motherhood Challenging

Thymectomy Seen to Aid Remission in Ocular MG Patients Younger Than 40

Rituximab Safe and Effective in LOMG, Study Suggests

Rare Diseases Clinical Research Network Opens Online Survey on COVID-19

Guidelines Published for Managing MG During COVID-19 Outbreak

NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

UCB Acquires Ra Pharma, Adds Zilucoplan to Its MG Pipeline

New MG Cell Model May Best Capture How Autoantibodies Affect Muscles in MG

Soliris Suitable for gMG Patients with Myasthenic Crisis and Thymoma-associated Disease, Study Suggests

NORD’s Advice on COVID-19: You’re Stronger Than You Think

Age Among Factors Affecting Survival in MG Patients with Thymoma Surgery

NORD Partners with ‘Sing Me a Story’ for July 18-20 Living Rare Forum

Global Rare Disease Group’s Focus: 1,000 New Therapies by 2027, Despite COVID-19

I Got Tested for COVID-19 — Here’s What It Was Like

Immunoglobulin Helps by How It Acts on Regulatory T-Cells, Study Finds

Dual Immunoglobulin, Aimovig Therapies Safe for MG, Migraines, Report Says

Fighting to Live During a Nationwide COVID-19 Lockdown

Increasing Expenses for MG Patients In China Suggest Inadequacy of Current Medical Insurance Policies, Study Says

Levels of Certain B- and T-cells Linked to Ocular MG Turning Generalized

Let’s Work Together to Stay Safe During the Coronavirus Crisis

Osteopontin Protein May Worsen MG by Affecting Immune Cells, Study Finds

Complete MG Remission Seen as More Likely in Robot-assisted Thymectomy

Video: BioNews’ Social Media Campaign Highlights #WhatMakesMeRare

Expressing Gratitude: Being ‘Rare’ Has Positive Attributes, Too

HBM9161 Shows Potential to Treat Autoimmune Diseases, Early Data Suggest

Elsevier Opens Books, Review Articles to Rare Disease Researchers Starting Feb. 29

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