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How to Live Your Best Life With a Chronic Illness

https://www.youtube.com/watch?v=rCZunn4ML5o If you’re living with a chronic illness, it’s easy to slip into a malaise and feel sorry for yourself. This isn’t a helpful state of mind and it potentially means you’re missing out on life. In this video from NewLifeOutlook, Anna Scanlon shares her five…

These Lifestyle Hacks Will Help Anyone With a Chronic Illness

https://www.youtube.com/watch?v=dpUNgYbsQms If you have a chronic illness, you know just how much energy it takes to complete your daily chores and common household tasks. In this video from newlifeoutlook, Jennifer shares some practical tips to help make life a little easier for anyone suffering from a chronic illness. MORE: What is…

FDA Awards Fast-track Status to Sangamo’s Investigational Gene Therapy SB-525 for Hemophila A

The U.S. Food and Drug Administration (FDA) has granted fast-track status to SB-525, a clinical gene therapy for hemophilia A developed by Sangamo Therapeutics in partnership with Pfizer. SB-525 delivers a human factor VIII cDNA construct and synthetic liver-specific promoter to the cell’s nucleus by using recombinant adeno-associated virus (rAAV). The…

What Is a ‘Spoonie’?

If you’re active on the Internet, particularly in groups and forums regarding chronic illness, you’ve definitely noticed the term “spoonie” being thrown around. MORE: Although there’s no cure for hemophilia, there are ways that to manage the disease and avoid bleeding episodes. Spoonie is a term coined…

BAY 94-9027

BAY 94-9027, developed by Bayer, is an investigational treatment for severe hemophilia A. It is a PEGylated molecule of recombinant factor VIII in which the B-domain, a region within the factor, is deleted. The therapy is produced using a baby hamster kidney cell line (BHK-21), and has…

BAX 855

BAX 855 (Adynovate) is an approved factor replacement therapy, developed by Baxter International to prevent and treat bleeding in people with hemophilia A. How BAX 855 is manufactured BAX 855 (or rurioctocog alfa pegol) is a PEGylated molecule of full-length recombinant factor VIII (FVIII) produced in Chinese hamster ovary…

Extended Half-Life (EHL) Products

The recommended treatment regimen for patients with severe hemophilia to prevent bleeding episodes is to replace the deficient clotting factor. However, currently available replacement clotting factors are limited by their relatively short half-lives and require intravenous injections up to three times a week to maintain protective levels. This can have…

Prophylaxis

Prophylaxis is commonly referred to as a preventive measure in hemophilia of regularly infusing blood clotting factor concentrates to avoid bleeding. This approach stemmed from research that patients with mild-to-moderate hemophilia (or those who have clotting factor levels of 1 percent or more) rarely experience spontaneous bleeds and have less joint damage…