Today is Rare Disease Day, when we lift up the stories of the 300 million people who live with more than 6,000 rare conditions. This year’s theme focuses on bridging health and social care, alleviating the heavy burden on people who coordinate medical, social, and support services for themselves and their loved ones. The National […]
Rare Disease
A deep dive into food allergy research and education
Longtime followers of this blog know I believe in the power of peers, particularly among people living with rare conditions, and may also know that I am a food-allergy mom. This past weekend I had the chance to attend the annual conference for my rare community, FAREcon, and drink from the peer advice well. Warning: This […]
Case study: One in a million diagnosis
When we get sick or face a new challenge in our lives, we often feel alone, but we shouldn’t. There are people who have been in the same situation and are eager to help if they only knew how to find us. That’s one of my core beliefs, based on the fieldwork and research I’ve […]
The Rise of the New Bio-citizen
Over the next two days, I’ll be part of a group convened by Eleonore Pauwels and Todd Kuiken to discuss barriers to citizen-driven biomedical research. If you are intrigued, read the report, “The Rise of the New Bio-citizen,” which lays out how people “are pursuing a range of activities from analyses of genomic data for […]
Unrest
The film “Unrest” will debut on Independent Lens this week (check your local listings — in the DC area it will air on Jan. 12 at 10:30pm on WETA). I couldn’t wait and bought my own digital copy on Amazon. Let me just say: It’s no surprise that it’s on the short list for an Academy […]
Re-imagining care for hospitalized kids
On Nov. 1-2, 2017, Hope for Henry convened a diverse group of parents, kids, clinicians, designers, educators, and entrepreneurs to reimagine care for hospitalized kids. I’ll disclose that I am an advisor to Hope for Henry and helped organize the event, but I hope you’ll believe me when I say that it was, objectively, a […]
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