Lipodystrophy United Is Back! Please frequently visit our website to see updates!
Lipodystrophy United Is Back! Please frequently visit our website to see updates!
Lipodystrophy United (LU) is an organization of committed individuals living strong with lipodystrophy. We provide an interactive community, facilitating support and education for anyone affected by lipodystrophy. We serve as a resource and to increase awareness in the general population as well as the medical and insurance communities. We advocate and act as a catalyst for new patient diagnosis by assisting healthcare professionals in the understanding of lipodystrophy trends, physical attributes and clinical symptoms in order to aid in the advancement of knowledge, treatment and future research.
As a group of volunteers, LU is dedicated to meeting our communities’ needs in the US and globally. We provide an informational website with education, patient stories and links to partners and research. We connect patients to each other and to physicians around the world. LU provides frequent updates to the community via social media including new research or community awareness activities. We answer all inquiries that come our way and if we don’t have the answers, we will help you find them. In addition, we actively participate in advocacy training and partner with the greater rare disease community.
Lipodystrophy United (LU) is an organization of committed individuals living strong with lipodystrophy. Our mission is to provide an interactive community, facilitating support and education for anyone affected by lipodystrophy. We serve as a resource and to increase awareness in the general population as well as the medical and insurance communities. We advocate and act as a catalyst for new patient diagnosis by assisting healthcare professionals in the understanding of lipodystrophy trends, physical attributes and clinical symptoms in order to aid in the advancement of knowledge, treatment and future research.
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."
In partnership with Chiesi Pharmaceuticals, the foundations above (and more) collaborate on global initiatives aimed at improving the lives of people with lipodystrophy.
We’re proud to unite around our shared mission and goals to create a better future for all affected by lipodystrophy.
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