Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders gave a few tips for those  looking to begin the complex process in its Feb. 20 webinar.  William Whitman,…

My wife and I learned early to be careful when discussing the struggles we share in caregiving. Sometimes we get tired and want to complain, but we must remember that our children hear and see us. If we say something in total frustration, our children might blame themselves…

The Analysis Group has partnered with China’s Institute of Hematology & Blood Diseases Hospital (IHBDH) to create the first blood disease research platform in that country. The new platform, called the National Longitudinal Cohort of Hematological Diseases in China (NICHE), will store clinical data on more than 10,000 people…

I faced my old friend, the medical supplies boxes, still not believing the task ahead of me. I almost spoke to the six boxes stacked on top of one another. “I am sorry,” I wanted to say, “but we do not need you any longer. We must move on.” Each…

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…

As I slowly approach the big three-zero (two more years to go!), I can’t help but reflect on the state of my health. Physical symptoms scare me now more than ever, and I want them checked as soon as possible. I’ve been trying to commit to healthier habits as well…

The last time my youngest son spent the night in a hospital due to a breakthrough bleeding episode was in February 2014. As years passed, his health continued to improve, and life returned to normal. The only difference between my son and the boy next door was the…

The National Organization for Rare Disorders (NORD) is seeking participants for its survey-based study Living Rare, which aims to better understand the real-world lived experiences of people in the U.S. with rare diseases. Living Rare, the first large-scale study of its kind in the U.S., seeks to capture the…

Last weekend was a testament to the importance of community support for those who struggle with bleeding disorders. As the vice president of Sangre de Oro, the New Mexico chapter of the National Bleeding Disorders Foundation (NBDF), I’ve witnessed the challenges our organization has faced over the years.

I can already tell this journey will be long, and that sucks. I remind myself to breathe. Inhale for a count of three, hold for a count of four, exhale for a count of five. Repeat. I wring my hands, fight back tears of frustration, and try again. I name…