By joining, you become an essential part of a community working together to advance medical research, enhance patient care, and ultimately find potential cures. Your participation contributes to a wealth of data that researchers rely on to better understand these rare diseases, leading to improved diagnostic and treatment options.
Anyone impacted by rare diseases can participate in the registry. This includes patients, caregivers, and loved ones. Your unique perspective and experiences are invaluable contributions to our mission. Join us and make a difference!
Yes, your information is secure. We take privacy seriously and follow strict confidentiality measures. Your data is anonymized and stored safely, complying with all relevant regulations to ensure your information is protected.