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“The generalized lipodystrophy community has grown in the last few years. People have come together a lot, on Facebook especially. We all have things in common. ”
Camerin / / Lorelei’s mother
“The generalized lipodystrophy community has grown in the last few years. People have come together a lot, on Facebook especially. We all have things in common. ”
Camerin / / Lorelei’s mother
Whom can I talk to about living with GL?
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.
Faces of GL: Living with GL, living with strength
People often asked why Dena and Raeya were so skinny or so muscular, but before they learned that they had GL, there were no answers. Play video to learn more.
Lipodystrophy United Facebook Page
An organization of committed individuals living with lipodystrophy, whose mission is to provide an interactive community facilitating support and education.
To learn more, visit facebook.com/LipodystrophyUnited
National Organization for Rare Disorders (NORD)
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.
To learn more, visit rarediseases.org
Global GenesTM
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.
To learn more, visit globalgenes.org
RareConnect
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.
To learn more, visit rareconnect.org
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