Sonia’s story is one of survival, resilience, and the lasting impact of lipodystrophy. Even after life-saving transplants, the disease still shapes her daily life. Donate to help patients attend the EL-PFDD—and check if your employer will match your gift lipodystrophyunited.org/form/25-for-...

25 Stories for $25K | Story 18: Sydney Understanding her diagnosis has helped Sydney better manage her health, advocate for herself, and navigate questions with confidence. Help us MATCH $25K and check if your employer will match your gift Donate: lipodystrophyunited.org/form/25-for-...

25 Stories for $25K | Kara Rare disease patients shouldn’t have to become experts in appeals and denials just to access care. Help us MATCH $25K to bring more patient and caregiver voices to the EL-PFDD. Donate: lipodystrophyunited.org/form/25-for-... #25StoriesFor25K #ELPFDD #LipodystrophyUnited

Only 3 days left to register for our hotel block and travel stipend! Register through our website and receive the hotel and stipend link! If cost has been holding you back, please apply; we don’t want anyone to miss this incredible weekend! Register: lipodystrophyunited.org/register-el-...

After a heart transplant, Ashley manages an intense daily treatment routine and never expected lipodystrophy to threaten her transplanted heart, too. Help us MATCH $25K. Check if your employer will match your gift to double your impact. Donate: lipodystrophyunited.org/form/25-for-...

For Rhonda, research is personal; a way to better understand herself and build a better future for her son and others. Help us MATCH $25K to bring more voices to the EL-PFDD. Your employer may match your gift, doubling your impact. Donate: lipodystrophyunited.org/form/25-for-... #25StoriesFor25K

Story 15: Sharon is sharing her story so future therapies can keep pace with the progressive nature of lipodystrophy. Help us match $25K to bring more patient voices to the EL-PFDD. Check if your employer matches donations to double your impact! Donate: lipodystrophyunited.org/form/25-for-...

Every story shared at the EL-PFDD becomes part of the Voice of the Patient Report, a resource that helps the FDA, researchers, and drug developers better understand life with lipodystrophy. 📅 September 11–13 Register: lipodystrophyunited.org/register-el-... #EL-PFDD #LipodystrophyUnited

Story 14: Rebekah 💙 Rebekah shouldn't have to prove her disease exists—and neither should you. Help us match $25K. Check if your employer matches donations to double your impact! Donate: lipodystrophyunited.org/form/25-for-... #25StoriesFor25K #ELPFDD #Lipodystrophy

Story 13: Crystal 💙 Crystal knows the fear of being told she's "too healthy" to qualify for treatment—and of losing access to a therapy that works. Help us match $25K to bring more voices to the EL-PFDD. Check if your employer matches donations! #25StoriesFor25K #ELPFDD

What will we discuss at the EL-PFDD? We'll focus on two key topics: the burden of living with lipodystrophy and the burden of treatment. Join us September 12–13 for community activities, research updates, and our gala! Registration: lipodystrophyunited.org/register-el-... #ELPFDD #Lipodystrophy

25 Stories for $25K | Story 11: Becky Living with a rare disease often means living with uncertainty. Becky reminds us why more research and patient voices are important. Help us MATCH $25,000 for the EL-PFDD. Donate: lipodystrophyunited.org/form/25-for-... #25StoriesFor25K #ELPFDD #Lipodystrophy

Zainab is a nutritionist and Lipodystrophy United community member living withAGL. Did you know there are four levels of processed foods? Stay tuned as Zainab explains each level and shares how they differ in our upcoming videos! #Lipodystrophy #AGL #Nutrition #ProcessedFoods #RareDisease

25 Stories for $25K | Story 10: Christine After 43 years, Christine had to give up the life she loved because of lipodystrophy. Help us raise $25K to bring more patients to the EL-PFDD. 💙 Donate: lipodystrophyunited.org/form/25-for-... #25StoriesFor25K #ELPFDD

25 Stories for $25K | Story 9: Briana We're sharing stories like Briana's to ensure those everyday experiences help shape the future of treatment. Help us match $25,000 to bring more patients and families to the EL-PFDD. Donate: lipodystrophyunited.org/form/25-for-... #25StoriesFor25K #ELPFDD

Why does your voice matter? Because no one understands life with lipodystrophy better than the people living it every day. Join us for the EL-PFDD, September 11–13, and help make sure every voice is heard. Registration: lipodystrophyunited.org/register-el-... #ELPFDD #Lipodystrophy

25 Stories for $25K | Story 8: Jennifer Success isn't just better lab results, it's having the energy to enjoy everyday life. Help us send patients to the EL-PFDD and ensure voices are heard. Donate: lipodystrophyunited.org/form/25-for-... #25StoriesFor25K #ELPFDD #LipodystrophyUnited

Zainab is a nutritionist and Lipodystrophy United community member living with AGL. In this video, she explains how balanced meals, fiber, and lean protein can support blood sugar management and why reducing processed foods is important. #Lipodystrophy #Nutrition #BloodSugar #LipodystrophyUnited

25 Stories for $25K | Story 7: Kenzo Doing everything "right" doesn't mean the burden disappears. Help us raise $25,000 for the EL-PFDD. Donate: lipodystrophyunited.org/form/25-for-... #25StoriesFor25K #ELPFDD #LipodystrophyUnited

Thank you to the Chronic Liver Disease Foundation and Dr. Brown for creating and sharing this educational resource. Learn how adipose tissue deficiency affects people living with lipodystrophy and why understanding leptin is so important to understanding the disease.

25 Stories for $25K | Story 6: Gretchen Lipodystrophy has impacted Gretchen and her family, fueling her to fight for early diagnosis, awareness, treatments, and to help ensure no family faces this disease alone. Help us raise $25,000 for the EL-PFDD. Donate: lipodystrophyunited.org/form/25-for-...

There are many ways to participate in the EL-PFDD! Attend in person, join virtually, share your story, participate in the audience, or submit written comments. Every voice helps shape the future of lipodystrophy care. 📅 September 11–13, 2026 🔗 Register: lipodystrophyunited.org/register-el-...

25 Stories for $25K | Story 4: Mallory Pain isn't just one symptom, it can take many forms and affect every part of life. We're sharing stories like Mallory's to ensure our pains are seen. Help us raise $25,000 for the EL-PFDD Donate: lipodystrophyunited.org/form/25-for-...

25 Stories for $25K | Story 4: Carminho This is our chance to share what we need from future therapies designed for our bodies. Help us raise $25,000 to bring more patients and families to the EL-PFDD. Donate: lipodystrophyunited.org/form/25-for-... #25StoriesFor25K #ELPFDD #LipodystrophyUnited

25 Stories for $25K | Story 3: Julian As we count down to our EL-PFDD meeting, stories like Julian's highlight why earlier diagnosis, better treatments, and patient voices matter. Help us raise $25,000 to bring more patients to the EL-PFDD. Donate: lipodystrophyunited.org/form/25-for-...

Who should attend the EL-PFDD? Whether you're living with lipodystrophy, a caregiver, a family member, a friend, a healthcare professional, a researcher, or just want to better understand, your presence matters. Join us lipodystrophyunited.org/register-el-...

25 Stories for $25K | Story 2: Serj Every patient deserves the chance to live a full life. As we count down to our EL-PFDD meeting, we're sharing stories like Serj's to highlight why patient voices matter. Help us raise $25,000! Donate: lipodystrophyunited.org/form/25-for-...

25 Stories for $25K | Story 1: Maryanna As we count down to our EL-PFDD meeting, we're sharing 25 stories to raise $25,000 and help more patients and families attend in person. Every story matters. Every donation makes a difference. Link coming soon! #25StoriesFor25K #ELPFDD #LipodystrophyUnited

We're so excited to introduce some of the newest members of the Lipodystrophy United community who generously volunteered to share their stories through our latest photoshoot! Thank you for helping us build a more visible, connected, and hopeful future for everyone affected by lipodystrophy.

Receiving a rare disease diagnosis can change every part of your life, even how you see yourself. Read Bethany Oeming's powerful story about navigating lipodystrophy as a physician, a woman, and a mother, and how her diagnosis reshaped her perspective. Read here: www.cbc.ca/news/canada/...