Lipodystrophy United

Lipodystrophy United (LU) is a non- profit 501 (c)3 organization composed of committed individuals living strong with Lipodystrophy (LD).

[Lipodystrophy United @LipodystrophyLU]

👀 Something new is coming...
We've been working behind the scenes on something designed to better serve the lipodystrophy community. We can't wait to share it with you. Stay tuned!

#LipodystrophyUnited #Lipodystrophy #RareDisease #ComingSoon

[Lipodystrophy United @LipodystrophyLU]

Have nutrition questions? We're excited to welcome Zainab Alzoubi for an upcoming nutrition Q&A! Zainab holds a master's degree in Nutrition and Dietetics from the University of Illinois. Drop your nutrition questions in the comments below, and they may be featured!

[Lipodystrophy United @LipodystrophyLU]

Have you watched CNBC Cures: Defying Rare Disease? This powerful documentary is an inspiring look at the impact of patient communities and the power of coming together to create change.

Watch here: https://t.co/KXZal4gFap

[Lipodystrophy United @LipodystrophyLU]

New Lipodystrophy Study Opportunity!
Lipodystrophy United is sharing a paid research opportunity for people living with generalized lipodystrophy or partial lipodystrophy, as well as caregivers who usually administer injections to the patient.

[Lipodystrophy United @LipodystrophyLU]

Lipodystrophy United is heading to BIO 2026 in San Diego! We’re excited to connect with researchers, biotech leaders, patient advocacy organizations, and partners working to advance rare disease innovation.
Attending BIO 2026? We’d love to connect.
#BIO2026 #Lipodystrophy

[Lipodystrophy United @LipodystrophyLU]

We are happy to announce we’ve been selected to present a poster at ENDO 2026, which will be held June 13-16, 2026, in Chicago, IL. This is an amazing opportunity to highlight the importance of mental health challenges that come with living with lipodystrophy. See you there!

[Lipodystrophy United @LipodystrophyLU]

Tea with LU is back! Whether you've been having a great few months or facing challenges, this is a space to share, listen, and support one another.
📅 June 23, 2026
⏰ 6:00 PM Central Time
We look forward to seeing everyone again. Register here: https://t.co/ZXcN21bUSF

[Lipodystrophy United @LipodystrophyLU]

Not all high triglycerides are the same. In lipodystrophy, they can become dangerously elevated and lead to serious complications. Let’s keep the conversation going. 👇 #RareDisease #Lipodystrophy

[Lipodystrophy United @LipodystrophyLU]

A new study suggests monogenic lipodystrophy may be more common than previously believed, and often missed.

Read here: https://t.co/T4IRRmaofd

[Lipodystrophy United @LipodystrophyLU]

Take a behind-the-scenes look at lipodystrophy research with Mallory!
We love seeing community voices help make research feel more accessible and connected. Check out the full video on YouTube: https://t.co/DClaJRnX3s

[Lipodystrophy United @LipodystrophyLU]

PCOS has a new name: PMOS — Polyendocrine Metabolic Ovarian Syndrome.
This change helps widen the lens beyond ovaries and cysts to include hormones, insulin resistance, metabolic health, fertility, mental health, and long-term risk.
Read here: https://t.co/VQdwB0lbzL

[Lipodystrophy United @LipodystrophyLU]

Want to be part of our next Lipodystrophy United photo campaign? We’re heading to Chicago on Saturday, June 13th, and we’re looking for community members who want to help us
Interested in joining us? Sign up here: https://t.co/5mTqzeNxoa

[Lipodystrophy United @LipodystrophyLU]

We’re excited to share that Lipodystrophy United is now officially a Platinum Member of NORD! This membership opens the door to new opportunities for collaboration, learning, advocacy, and connection within the rare disease community.
#LipodystrophyUnited #NORD #RareDisease

[Lipodystrophy United @LipodystrophyLU]

Meet Becky, our newest community photoshoot participant! Becky has AGL and was so excited to be part of this mission to show the real faces and stories of the lipodystrophy community.

Be on the lookout for more images from the shoot!

#LipodystrophyUnited #Lipodystrophy

[Lipodystrophy United @LipodystrophyLU]

Our Voices of LU: Acquired Types Cohort begins next Tuesday, May 12, at 6 PM ET.
This cohort is a space for people affected by acquired types of lipodystrophy to connect, share experiences, and better understand the community's needs.
Register here: https://t.co/cHXlO9oWKB

[Lipodystrophy United @LipodystrophyLU]

Behind the scenes of the Lead Study. Clinical trials are more than appointments and data points. They involve patients, clinicians, researchers, and so many people working together to better understand lipodystrophy. Thank you to Dr. Oral and her team for giving us a closer look!

[Lipodystrophy United @LipodystrophyLU]

For people living with lipodystrophy, understanding and managing triglycerides is an important part of care. Lifestyle factors, medications, and regular monitoring all play a role.
#Lipodystrophy #LipodystrophyAwareness #Triglycerides #RareDiseaseAwareness #LipodystrophyUnited

[Lipodystrophy United @LipodystrophyLU]

Calling all Acquired-Type Lipodystrophy Patients/Caregivers!
Our first session is on May 12 at 6 PM CST. If you or a loved one is living with acquired lipodystrophy, join us for a supportive, structured space to connect and learn together.
Register here: https://t.co/cHXlO9oWKB

[Lipodystrophy United @LipodystrophyLU]

Check out Mallory showing off her care package! She was one of many recipients in our first round, and we’re so excited to keep sending these out to more members of our community.
Want one too? Sign up here: https://t.co/2DmSuSKLk7

[Lipodystrophy United @LipodystrophyLU]

Looking for a supportive space with others who understand LMNA-related conditions? The LMNA Cardiac Diseases Network hosts virtual community events designed to connect patients and families Sign up here: https://t.co/qPHNcUTLz8