Lipodystrophy United

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!

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

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: us06web.zoom.us/meeting/regist…

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: forms.gle/aNdfzEHw1MMg4P…

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: lmnacardiac.org/patient-meetin…

ICD-10-CM codes matter! These lipodystrophy diagnosis codes help clinicians document the condition, support care planning, and enable consistent data tracking and sharing across healthcare systems.

Huge congratulations to Sydney Billington for competing in Miss Illinois Teen! 👑 We are so proud of you for showing up with confidence and heart, and for representing the rare disease community on that stage. Thank you, Sydney, for using your voice and helping others feel seen.

Check out the #RAREis Scholarship Fund! Powered by EveryLife, 58 $5,000 scholarships will be awarded to individuals with rare diseases pursuing higher education in Fall 2026. Apply: RareScholarship.org. Closes Apr 28, 2 PM ET.

RSVPs are open for our EL-PFDD weekend (Sept. 11, 2026) in Alexandria, VA, at Embassy Suites Old Town! RSVP here: zeffy.com/en-US/ticketin…

Our 2025 Annual Report is here! 🎉 Take a look at the impact you made possible, community moments, progress, and what’s next for Lipodystrophy United. Now available on our website. #lipodystrophyunited #lipodystrophy #WLD #raredisease

New resource 📘💚 Introducing our Lipodystrophy Mental Health Series, created with Give an Hour. Swipe through for highlights and practical tools you can use right now. Find it on our website! #lipodystrophyunited #lipodystrophy #WLD #raredisease

Watch now: Gretchen’s story is featured in our World Lipodystrophy Day 2026 Symposium recording, now available on our YouTube. ❤️🎥 Watch here: youtu.be/jVmUexQICl0 #lipodystrophyunited #lipodystrophy #WLD #raredisease

Here’s a warm message from Kate Stratton for WLD! #lipodystrophyunited #lipodystrophy #WLD #raredisease

TODAY is World Lipodystrophy Day 2026! 🌍We’re proud to stand with patient organizations around the world to raise awareness, reduce isolation, and amplify the voices of people living with lipodystrophy. Stay tuned for more! #lipodystrophyunited #lipodystrophy #WLD #raredisease

Tomorrow, for WLD, we’re excited to welcome Dr. Andrew Lutkewitte for a special talk for our community. He’ll break down key insights from his work and what they may mean for our community, plus we’ll save time for Q&A. Sign up here: us06web.zoom.us/meeting/regist…

Ahead of World Lipodystrophy Day, we’re sharing this powerful story of Dr. Elif Oral and Mallory, how one unique patient case helped inspire research and deepen our understanding of lipodystrophy. Read it here: michiganmedicine.org/health-lab/uni…

Need support? Lipodystrophy United is sharing Give an Hour’s Rare Caregiver Program; free, confidential mental health services for people living with rare diseases, caregivers, and loved ones. Register here: giveanhour.tfaforms.net/11

Learn about the history of World Lipodystrophy Day (March 31) and why the global community comes together each year on Instagram/Facebook. And don’t forget to join the “L” Campaign, share your “L” to show unity and support. 💚🌍#WLD2026 #TreatmentEquity #Lipodystrophy

Save the date! 🌍 World Lipodystrophy Day Virtual Symposium — March 28, 2026 | 11 AM CT. We’ll focus on mental health + share our 2025 impact. Can’t wait to see you! ❤️ Sign up: us06web.zoom.us/meeting/regist…

Here’s an amazing resource from The American Society of Gene & Cell Therapy (ASGCT) that explains what a genetic report is and how it helps families! Check it out patienteducation.asgct.org/research-clini…