EURORDIS - European Organization for Rare Diseases

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on peoples' lives . Every donation in support of Rare Disease Day strengthens the global rare disease movement. By increasing awareness for people living with a rare disease, your gift will help mobilize individuals and communities around the world to work towards more equitable access to diagnosis, treatment, care and social opportunity. Thank you for your support! Learn more at www.rarediseaseday.org Rare Disease Day was founded in 2008 and is coordinated by EURORDIS Rare Diseases Europe with national alliance patient organisation partners.

In July 2024, I suffered a severe adverse reaction to a new medication, diagnosed as Stevens-Johnson Syndrome (SJS). SJS is an exceptionally rare and dangerous condition, affecting only 1 to 2 people per million. It causes burn-like sores on the skin and mucous membranes, leading to risks of infection, organ damage, sepsis, or death. What began as flu-like symptoms quickly turned into the fight of my life, upending my world as a healthy, 31-year-old newlywed. After two misdiagnoses, a skin biopsy confirmed SJS, and I was rushed to the burn and intensive care unit at Brigham & Women’s Hospital in Boston, Massachusetts. The blisters which formed caused internal and external burns on over 20% of my body, and I endured severe ocular damage, including temporary blindness due to a skin-grafting procedure to save my eyesight. Surviving the ICU was only the beginning. Slipping in and out of consciousness, my nurses became my lifeline, tirelessly administering steroids and opioids to slow the progression of the disease and manage my pain. My doctors, accompanied by curious medical students, vigilantly monitored my care. Thanks to their expertise, I am now making a full recovery at home. There is no cure for SJS – only searching for ways to mend the soul which survived unspeakable trauma. The scars on my skin, mouth, and eyes are lasting physical reminders of what I endured, but the emotional toll has been equally immense. It will take time for my good days to outnumber the bad, still, I am profoundly grateful for the world-class care I received, especially for a disease with so little known about it. Very few people truly understand the isolation of recovering from a rare disease. That’s why I’m asking for your support in donating to my fundraiser for Rare Disease Day 2025 , observed annually on February 28 (or February 29 in leap years—the rarest day of the year). This globally coordinated event raises awareness and promotes equitable healthcare, diagnosis, and treatment for over 300 million people living with rare diseases. Thank you for your generosity and support! Learn more about Rare Disease Day: https://www.rarediseaseday.org/