There are people living with GL who want to help you and others like you. Resources and advocacy groups can provide information, support, and advice for people living with a rare disease.
The mission of Global Genes™ is to build awareness, educate the global community, and provide critical connections and resources that equip advocates to become activists for their disease.
NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve those people.
NORD, along with its more than 250 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
NORD provides a unified voice for people with rare disorders—and the parents and other caregivers who help them—so that they will not have to fight their battle alone.
RareConnect is an online platform that provides people from around the world with a virtual place to talk about their experiences living with a rare disease.