Lipodystrophy United Is Back! Please frequently visit our website to see updates!
Lipodystrophy United Is Back! Please frequently visit our website to see updates!
Please watch these videos for a basic understanding of lipodystrophy with patient perspective!
Lipodystrophy UK has crafted a thorough introductory resource on lipodystrophy, serving as a valuable tool for the patient community. This comprehensive guide incorporates patient stories spanning various lipodystrophy types, offering a nuanced understanding of their experiences.
European Consortium of Lipodystrophies is a network of lipodystrophy research groups. Their website provides basic information about the disease, monthly publications, and summaries of yearly meetings with researchers and patient advocacy groups making it a great general resource for the lipodystrophy community.
Lipodystrophy Canada provides educational resources and support networks for individuals living with Lipodystrophy, aiming to empower them with knowledge and community. Additionally, they promote awareness and facilitate participation in events related to Lipodystrophy to foster understanding and advocacy.
AELIP, established in 2012 after the passing of Celia Carrión Perez de Tudela, focuses on researching and providing hope to those globally affected by Lipodystrophy, residing in Spain. Through advocacy, support, and collaboration, they strive to improve the quality of life for patients and their families, aiming for a future where this complex disease can be cured.
The organization aims to identify and support individuals with lipodystrophies, improve diagnosis and awareness, facilitate access to relevant care centers, disseminate research information to patients, promote medical research, and foster community support through financial backing and creating social spaces for patients, doctors, and families, specifically in France.
ASPOSBERN is a pioneering association in Brazil and globally, providing support and care for individuals with Berardinelli Syndrome, a rare condition characterized by severe adipose tissue loss. Founded by two mothers, Márcia Guedes and Virgínia Kelly, it has expanded its reach to 17 states in Brazil and has provided assistance internationally, with a dedicated medical team known as their "angels in white coats."
Andra explains the effects of abnormally distributed adipose tissue and low leptin levels. With no safe fat storage, it accumulates in the bloodstream, concentrates around organs, potentially causing organ failure.
Andra talks about the need for clinicians to work with patient organizations in disease research. Keeping the patient involved in every step of their research is vital to treating patients more successfully. Clinicians usually focus on the metabolic effects of the disease, but lipodystrophy is a multi-system disease.
Andra discusses misdiagnoses by highlighting that patients are often underdiagnosed and misdiagnosed. Generalized Lipodystrophy in women is generally diagnosed because lack of adipose tissue is usually recognized by doctors. However, diagnosis can take many years and a lot of effort.
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