Tough Genes

Global Genes Global Advocacy Alliance member focused on rare disease support, education, advocacy, or research. Tough Genes is dedicated to advancing research and treatment for rare genetic disorders, with a focus on IRF2BPL-related conditions. Founded by families directly impacted, our mission is to accelerate life-saving scientific progress, support affected individuals and their loved ones, and raise awareness of ultra-rare diseases. Directory information only; not medical advice, legal advice, or endorsement. Services and eligibility should be confirmed with the organization.