Danny’s Dose Alliance

Global Genes Global Advocacy Alliance member focused on rare disease support, education, advocacy, or research. Darlene Shelton and her family created the Danny’s Dose Alliance in 2015 after their attempts to assure proper emergency treatment for their grandchildren with hemophilia revealed a gap in prompt and proper emergency care for those with all types of “Special Medical Needs”. In working with their state EMS association, they realized the issues appear to be conflicting protocols, fear of liability and lack of education. The Sheltons knew this could be changed and lives would be protected. This knowledge helped form the 3 Main Goals of the organization: 1. Raise awareness to the issue and see changes made to existing protocols which would include following the Emergency Medical Orders of the patient’s specialist for treatment guidelines and to include administering patient carried specialty medications 2. Help to create nationally recognized, disease specific Treatment Guidelines and a nationwide Specialized Education Initiative in rare disease and chronic illness for emergency services p Directory information only; not medical advice, legal advice, or endorsement. Services and eligibility should be confirmed with the organization.