Lymphangiomatosis & Gorham's Disease Alliance (LGDA)

?? Researchers, let’s make a difference! ?? The LMI Pilot Awards are here to support your innovative ideas in rare disease research. With up to $75,000 available for projects focused on CCLA, GLA, GSD, or KLA, we’re looking for new hypotheses or technologies that promise significant advancements. ??? Key Dates: March 21: Deadline for LOIs May 30: Submission for full applications August 31: Notification of outcomes ??bit.ly/LMI_Research #LMI #ResearchGrants #MedicalInnovation #CLAawareness #RareDiseases #LymphaticAnomalies #VascularMalformation #VascularAnomalies #ISSVA International Society for the Study of Vascular Anomalies (ISSVA) Lymphatic Education & Research Network

?? Researchers, let’s make a difference! ?? The LMI Pilot Awards are here to support your innovative ideas in rare disease research. With up to $75,000 available for projects focused on CCLA, GLA, GSD, or KLA, we’re looking for new hypotheses or technologies that promise significant advancements. ??? Key Dates: March 21: Deadline for LOIs May 30: Submission for full applications August 31: Notification of outcomes ??bit.ly/LMI_Research #LMI #ResearchGrants #MedicalInnovation #CLAawareness #RareDiseases #LymphaticAnomalies #VascularMalformation #VascularAnomalies #ISSVA International Society for the Study of Vascular Anomalies (ISSVA) Lymphatic Education & Research Network

The Urgency of Research Collaboration ?? Did you know? Rare diseases like CLAs require global collaboration. Research efforts are often fragmented, making it harder for experts to connect and develop life-changing treatments. The Lymphatic Malformation Institute, LGDA, and LGD Alliance Europe is committed to funding research for rare lymphatic anomalies like Gorham-Stout Disease, KLA, and GLA. By working together—patients, researchers, and healthcare professionals—we can accelerate discoveries, improve treatments, and change lives. ?? Let’s build a future where rare diseases aren’t so rare in medical knowledge! Donate to research today: bit.ly/47l1tYy #CollaborationForRare #CLAAwareness #RareDiseaseDay

?? Did you know? Scientists have discovered that genetic mutations in genes like PIK3CA, KRAS, NRAS, and CBL play a role in CLAs. This research is helping doctors develop targeted therapies to improve treatment options! Investment in research and innovation is key to improving the lives of people with rare diseases. Let’s keep pushing for progress! ?? ??bit.ly/CLAGuideBook #RareDiseaseDay #CLAScience #HopeForRare #CLAawareness

Inequalities in Healthcare ?? Did you know? Rare disease patients, including those with CLAs, often face unequal access to healthcare. With limited treatment options and few experts worldwide, many families must travel long distances or fight for the care they deserve. No one should be left behind because of where they live. We must work towards better access to care, treatments, and support for all rare disease patients. ???? Find a VAC center: https://bit.ly/3MTrCVz #EquityForRare #RareDiseaseDay #CLAAwareness

?? Understanding CLAs CLAs are a group of rare diseases caused by abnormal lymphatic vessel growth. They can affect the lungs, spleen, bones, soft tissues, and other organs, leading to serious complications. The four main types of CLAs are: ?? Gorham Stout Disease (GSD) – "Vanishing bone disease" ?? Generalized Lymphatic Anomaly (GLA) – Lymphatic malformations affecting soft tissue, bones & organs ?? Kaposiform Lymphangiomatosis (KLA) – An aggressive type of GLA with severe bleeding ?? Central Conducting Lymphatic Anomaly (CCLA) – Lymphatic vessel dysfunction causing fluid buildup Raising awareness leads to earlier diagnoses and better support for those living with these complex conditions! ?? ?? lgdalliance.org #RareDiseaseDay #CLAAwareness #LivingWithRare

Standing with the Rare Disease Community ?? Today, we stand in solidarity with the rare disease community. Living with a rare disease like CLAs means navigating uncertainty, fighting for care, and often feeling unheard. But you are not alone. We see you, we support you, and we will continue advocating for better research, treatments, and awareness. Together, we can make a difference. ???? Join us: bit.ly/3Q82yvy #CLAawareness #LightUpForRare #RareDiseaseDay #LymphaticMalformation #RareDiseaseCommunity

?? Professional Community Engagement for Rare Disease Week This Rare Disease Week, we have a unique opportunity to influence policy at a national level. The EveryLife Foundation's Community-Wide Petition is a key initiative aimed at addressing the recent impacts on the rare disease ecosystem through collective advocacy. ?? Join Us: As professionals, whether in healthcare, research, or other fields, your endorsement of this petition can significantly sway legislative priorities. ?? Timeline: The petition is available until February 27, and will be presented to Congress on February 28, 2025—Rare Disease Day. ?? Action Steps: Sign the petition bit.ly/4h11WTv, share within your professional networks, and encourage discussion on the importance of rare disease legislation. Let's leverage our professional influence to advocate for meaningful change! #RareDiseaseDay #RareDiseaseAdvocacy #LegislativeChange #CLAawareness

?? New Research Update: This recent publication provides significant insights into the development of complex lymphatic anomalies (CLAs) driven by KRAS mutations. Utilizing single-cell RNA sequencing, it details the composition and developmental trajectory of lymphatic endothelial cells (LECs) in normal and KRAS-mutated systems. This research highlights critical differences in the maturation of lymphatic vessels, opening avenues for therapeutic intervention in CLAs. Professionals in the medical and scientific community, let's connect and discuss the implications of these findings for future research and clinical strategies. ??https://lnkd.in/e3VAqGKK #MedicalResearch #HealthcareInnovation #CLAawareness #genemutation #LymphaticAnomalies #ComplexLymphaticAnomalies

?? Join #RareDiseaseWeek 2025 Virtually ?? This week, engage with key policymakers and watch poignant documentaries during Rare Disease Week. Participate in EveryLife Foundation for Rare Diseases' Legislative Conference and Congressional Caucus Briefing to understand and influence policies affecting the #RareDiseaseCommunity. ?? Documentaries: Feb 24-28 ?? Conference: Feb 25 ?? Briefing: Feb 26 Your voice is powerful—join us for advocacy efforts and help shape the future of rare disease policy. ?? https://bit.ly/41s6ihY Thank you to the Everylife Foundation for Rare Diseases. EveryLife Foundation for Rare Diseases #RareDiseaseWeek #Advocacy #StayInformed #CLAawarerness #ComplexLymphaticAnomalies