Sangamo Therapeutics has handed over the development of SB-525, a gene therapy for hemophilia A, to Pfizer, which will now advance the therapy into Phase 3 clinical trials. Pfizer has already started recruiting participants for the lead-in Phase 3 trial (NCT03587116). which will support…

This month has brought a holiday rush of hemophilia news on potential new treatments, studies, and acquisitions — all of which serve to raise hope during this solstice season, as we move past the shortest day of the year. Solstice can be a…

Takeda has presented new real-world data to support the cost-effectiveness and persistent benefits to patients of its hemophilia A and B therapies: Adynovate [antihemophilic factor (recombinant), PEGylated] and Feiba (anti-inhibitor coagulant complex). The findings were discussed at the recent 61st American Society of Hematology…

As the year draws to a close, I cannot help but review the successes and failures of the past 12 months. How do I continue to honor the many roles that I play as a husband, father, caregiver, and pastor? Where is there room for improvement? How can I improve…

As I look back on where I was at this time last year, I can honestly say that 2019 has been a fantastic year. My health has improved tremendously. My book, “Dear Hemophilia, Finding Hope Through Chronic Illness,” has been published. And most importantly, my sons with hemophilia have…

I am scrambling to find my way back to a schedule that includes time to write and research. For some reason, I am finding it difficult to get motivated. I set out to finish my doctorate in ministry from Austin Presbyterian Theological Seminary, and now I have it. What’s…

With Christmas only a few weeks away, Hemophilia Association of the Philippines for Love and Service (HAPLOS) threw its annual Christmas party. It’s a modest event, but seeing people gather, spread cheer, and enjoy one another’s company is heartwarming. The party is also a time to express gratitude to…

The holiday season brings happiness and joy to many. Homes are adorned with lights and decorations, and people wear clothing in festive colors. The excitement is contagious. However, many people find this time of year to be exhausting and even painful. When they are living with a rare or chronic…

With so much recent publicity surrounding gene therapy, it’s no surprise that the topic was a major focus of the recent 2019 NORD Rare Diseases & Orphan Products Breakthrough Summit. From diagnosis and clinical trial design to manufacturing, pricing strategies, and ethical concerns, gene therapy — both its high…

My 10-month-old baby, Cittie, is becoming a daddy’s girl. She looks for her daddy when she wants to play. She clings to him when she wants to be carried. She gets uneasy whenever he leaves the room. Jared, my husband, can’t even stand up to go to the bathroom, lest…