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July 9, 2020July 9, 2020

National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

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The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, of living with rare disease ... Read more

July 6, 2020July 6, 2020

CHMP Favors At-home Injection Form of Remsima for Europe

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The Committee for Medicinal Products for Human Use (CHMP), a branch of the European Medicines Agency (EMA), is recommending the use of a subcutaneous (under the skin) injection formulation ... Read more

June 23, 2020June 23, 2020

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

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The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization recently announced. The grants will ... Read more

June 22, 2020June 22, 2020

Simponi Effective, Including in Patients Who Tried Other TNF Blockers, Data Show

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Simponi (golimumab) — a TNF inhibitor — is an effective therapy for people with ankylosing spondylitis (AS) and other chronic inflammatory conditions, regardless of pre-treatment with other TNF inhibitors, real-world data from ... Read more

June 18, 2020June 18, 2020

Cosentyx Approved in US to Treat Active nr-axSpA

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Cosentyx (secukinumab) has been approved in the U.S. to treat people with active non-radiographic axial spondyloarthritis (nr-axSpA), its developer, Novartis, has announced. The approval by the U.S. Food and ... Read more

June 15, 2020June 15, 2020

Nepexto, Enbrel Biosimilar, Approved to Treat Patients in Europe

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Nepexto, a biosimilar to Enbrel (etanercept), has been approved by the European Commission to treat ankylosing spondylitis (AS) and several other inflammatory disorders. The therapy, co-developed by Mylan and Lupin, is ... Read more

June 10, 2020June 10, 2020

Coalition Will Address Racial Disparities in Rare Disease Communities

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The Black Women’s Health Imperative (BWHI) recently created a Rare Disease Diversity Coalition focused on reducing racial disparities in the rare disease community. Getting a timely and accurate diagnosis ... Read more

June 8, 2020June 8, 2020

FDA Approves Taltz for Non-radiographic Axial Spondyloarthritis

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Eli Lilly‘s Taltz (ixekizumab) has been approved in the U.S. to treat non-radiographic axial spondyloarthritis (nr-axSpA) in people who have objective signs of inflammation. “This approval reflects Lilly’s continued ... Read more

June 1, 2020June 1, 2020

UK Study Evaluating COVID-19 Lockdown Effect on Musculoskeletal Health

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Around 2,000 patients across the U.K. with ankylosing spondylitis (AS), psoriatic arthritis, or chronic pain conditions such as fibromyalgia will take part in a study aimed at understanding how the COVID-19 lockdowns ... Read more

May 28, 2020May 28, 2020

COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say

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While the ongoing COVID-19 pandemic won’t have much of an impact on cash available for new biotech startups, it has begun to cause delays in the development of gene ... Read more

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