Here, Chan writes about the mission of Rare As One, a program that will invest $4.5 million in patient-led endeavors to accelerate research into finding cures for rare diseases.
As a pediatrician, I’ve treated countless children with a rare disease. It’s hard, heartbreaking work that inspires me and so many others to work toward better research and treatments.
Often as a young doctor, I would look at a patient’s chart and see a diagnosis that I didn’t recognize. I would then do a literature search and realize that the medical and research community didn’t have many answers either. I learned that my best bet was to ask the patient and their family to teach me about their condition and how I could best support them. They taught me more than any textbook or lecture. I am a better physician because of those patients and families. I can see their faces as I write this and I am filled with gratitude.
Rare diseases are anything but rare. There are as many as 7,000 rare diseases affecting 400 million people worldwide. Many of these diseases are not well understood and lack treatment options. Most have no cure.
Despite this, many patients are meeting the challenges of rare disease head-on. They are working tirelessly to pursue diagnoses, information, support and treatment options. They do this knowing they and the people they love may not personally benefit from the work they do, but that their work might save future lives.
This is selflessness in its purest form.
My experiences as a young doctor taught me that science and medicine will be better if researchers can harness the power of patients in the fight against rare disease. Researchers are asking for this key resource and patients are willing to share what they know. That’s why we launched the Rare As One Project as part of our work at the Chan Zuckerberg Initiative. Our aim is to connect patient communities with researchers and clinicians so they can work collaboratively to find cures.
Together, we will succeed. Learn more at RareAsOne.org.