Celebrating Rare Disease Day!

According to the National Institute of Health (NIH), more than 10,000 rare diseases affect millions of people in the U.S., with 300 million people worldwide living with a rare disease. However, these conditions often take years to diagnose, and only 5% have FDA-approved treatments, leaving many patients without effective medical options.

Rare Disease Day, observed every February 28th, is dedicated to raising awareness about the challenges faced by individuals living with rare diseases. This global event not only highlights the need for quicker diagnoses and better treatments but also provides a platform for patients to share their stories and advocate for change. Increased awareness can drive research efforts and encourage the development of much-needed therapies.

Rare Disease Day is not just about awareness—it’s about action. By sharing stories, supporting research, and advocating for policy changes, we can drive progress toward improved healthcare solutions for those affected. Share a short video about your rare disease journey on Soapboxx or reply to this email with your story.

As part of our ongoing mission to support those affected by autoimmune and rare diseases, the Autoimmune Registry has welcomed a new network member, Precision Healthcare Ecosystem, a 501(c)3 nonprofit corporation created with the vision that "The Doctor of the Future is One's Self.” Its inaugural program, Project Apollo, utilizes a multidisciplinary, collaborative, and integrative care model, the “Study of Me,” to educate, enable, and empower participants to lead a personalized health journey guided by their quantified data.

To support the Autoimmune Registry, please share our information with others who have autoimmune diseases. Donations are also greatly appreciated!