Lymphatic Malformation Alliance

European Meet-up! People affected by #IsolatedLymphaticMalformations and #ComplexLymphaticAnomalies, families & caregivers are welcome. Share experiences or simply listen. 7 pm GMT / 8 pm CET on Zoom 🔗 Register: bit.ly/CLA-LMEuropeConnect

Caregivers, your experience matters too. 💚 The LM Patient Registry welcomes caregivers to share their own perspective, and your answers stay private, even from the person you care for. Learn more: lmregistry.iamrare.org/ #RareDisease

Do you support patients or families affected by #isolatedlymphaticmalformations or #complexlymphaticanomalies ? Finding a community of people who understand can make a real difference. Find support: lmalliance.org/

Were you in the LGDA Patient Registry? Watch your inbox for an IAMRARE® activation link. It connects your new account to your previous one and prefills your past answers. No email? Check spam, then contact [email protected].

European Meet-up! People affected by isolated lymphatic malformations and complex lymphatic anomalies, families & caregivers are welcome. Share experiences or simply listen. 7 pm GMT / 8 pm CET on Zoom 🔗 Register: bit.ly/CLA-LMEuropeConnect

The LM Patient Registry is now open, hosted on NORD’s secure IAMRARE® platform! Share your experience with lymphatic malformations and help guide future research. Voluntary, free, and open worldwide. Join: lmregistry.iamrare.org/

TODAY: North American Meet-up! People affected by isolated lymphatic malformations and complex lymphatic anomalies, families & caregivers are welcome. Share experiences or simply listen. 7 pm ET / 4 pm PT on Zoom 🔗 Register: bit.ly/CLA-LMNorthAmerConnec…

Connect. Find support. Join our European & North American online meet-ups for people affected by #IsolatedLymphaticMalformations and #ComplexLymphaticAnomalies. North American: 11/1/2026-7:00 pm ET bit.ly/CLA-LMNorthAmerConnec… Europe: 11/8/2026-7:00 pm GMT bit.ly/CLA-LMEuropeConnect

3 days until the LM Patient Registry opens! Rare should never mean invisible. Share your experience with lymphatic malformations and help guide research. Opens Monday, Nov 2. In the LGDA registry? Check your inbox for your invite. #RareDisease #LymphaticMalformations

We're proud to announce the upcoming launch of the LM Patient Registry, launching this Monday, November 2nd. This global effort will bring together patients, caregivers, and researchers to better understand lymphatic malformations and improve outcomes. More details coming soon.

Help patients and families connect. Share our upcoming North American online meet-up for people affected by #IsolatedLymphaticMalformations and #ComplexLymphaticAnomalies. 📅 Nov 1; 7:00 pm ET 💻 Zoom Register: bit.ly/CLA-LMNorthAmerConnec…

Researchers are testing a lymphatic-specific PET agent that visualized lymph nodes, vessels and altered drainage in mice. It is not ready for patients, but it may lead to better ways to measure lymph flow, disease severity and treatment response. 🔗bit.ly/4dLa3F4

The LM Patient Registry is sponsored by Lymphatic Malformation Alliance and hosted on National Organization for Rare Disorders' IAMRARE® platform. Together, we are building a trusted, secure space for the LM community to contribute to meaningful research.

Something important for the Lymphatic Malformation community is coming. 💙 Stay tuned. #RareDisease #LMCommunity #LymphaticMalformation #ComplexLymphaticAnomalies #LM #CLA #rarediseases #RareDiseaseAwareness #LMA #LymphaticMalformationAlliance

Looking for the latest research on isolated #LymphaticMalformations and #ComplexLymphaticAnomalies? Explore the Lymphatic Malformation Alliance's growing compilation of 2026 research papers, with direct links to publications. ow.ly/7hTf50ZULgf #LymphaticResearch

Can people with isolated #LymphaticMalformations or #ComplexLymphaticAnomalies have children? For many, the answer is yes—but planning and specialized care may be important. Learn about #pregnancy, fertility, medications and #FamilyPlanning: bit.ly/4hGXhIv #RareDisease

New research suggests #LymphaticMalformations aren't driven by PIK3CA mutations alone. Communication between abnormal lymphatic cells and immune cells may fuel disease growth, pointing toward future combination therapies. ▶️bit.ly/4i5klSI #RareDisease #PIK3CA

Do you support patients or families affected by #lymphaticmalformations or #complexlymphaticanomalies? Please share these resources with patients and families who may benefit: The Lymphatic Malformation Alliance - lmalliance.org/

New to #LymphaticMalformation research? Explore a free, one-year, primarily self-paced training program from LMI, Lymphatic Malformation Alliance & LE&RN. Learn the science. Connect with researchers and clinicians. Enroll year-round: bit.ly/LMEducation

New pediatric #vascularanomalies data: 50 patients treated with sirolimus ≥2 years showed no significant changes in height/weight percentiles compared with baseline growth trajectories. 🔗 bit.ly/3TgcYhU