we aim to educate, spread knowledge, and increase awareness about rare diseases among healthcare provides, patients and their families, researchers, public, pharmaceutical companies, laboratories, administrators, and decision makers. We achieve this goal through organizing scientific conferences, family meetings, social activities, workshops, and training programs. We also utilize online tools including publishing newsletters, create educational webpages, and place posts on social media.

we aim to connect people to exchange knowledge about rare disease. We organize social events to connect families with rare disease. We also create database for rare disease and establish webpage platform to enable online communication among families with rare diseases. We also establish databases for healthcare providers to be able to connect individuals with rare diseases to healthcare providers.

we aim to provide support for individuals with rare diseases and their families through establishing family support groups and facilitating receiving services from laboratories, healthcare facilities, rehabilitation centers, and social organizations.