⏳ Time is running out to apply for the MDBR Pilot Grant! This grant provides a unique opportunity for researchers interested in #ComplexLymphaticAnomalies. Open to international researchers. Don’t let this chance slip away—submit your LOI by September 20. Learn more and apply here: bit.ly/MDBR2024RFA #RareDisease #ResearchGrant #RareDiseaseResearch #FundingOpportunity #CLAawareness David Williams Michael Kelly Miikka Vikkula
Lymphangiomatosis & Gorham's Disease Alliance (LGDA)
Philanthropic Fundraising Services
St Petersburg, Florida 311 followers
Patient voice is central to everything we do.
About us
The LGDA is dedicated to improving the quality of life of patients with complex lymphatic anomalies by providing patient support and education; promoting and supporting basic science and patient-centered clinical research that will improve understanding of CLAs and establish best practices for their diagnosis and management; and advocating for public policies that benefit those living with these rare lymphatic diseases. Complex lymphatic anomalies (CLA) is an umbrella term which currently includes 4 overlapping, lymphatic-system maldevelopments resulting from somatic mutations in PIK3/mTor and RAS/MAPK signaling pathways: generalized lymphatic anomaly (GLA), kaposiform lymphangiomatosis (KLA), central conducting lymphatic anomaly (CCLA), and Gorham-Stout disease (GSD). Outdated terms for these diseases include lymphangiomatosis and lymphangiectasia.
- Website
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https://www.lgdalliance.org/
External link for Lymphangiomatosis & Gorham's Disease Alliance (LGDA)
- Industry
- Philanthropic Fundraising Services
- Company size
- 2-10 employees
- Headquarters
- St Petersburg, Florida
- Type
- Nonprofit
- Founded
- 2007
- Specialties
- Vascular Anomalies, Complex Lymphatic Anomalies, Rare Diseases, Gorham Disease, Generalized Lymphatic Anomalies, Gorham Stout Disease, Kaposiform Lymphangiomatosis, Central Conducting Lymphatic Anomaly, Rare Disease, rare lymphatic diseases, lymphatic malformations , CLA research, Rare Disease Research, Lymphangiomatosis, lymphatic system, vanishing bone disease, and PIK3CA gene
Locations
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Primary
Get directions
7901 4th St N
St Petersburg, Florida 33702, US
Employees at Lymphangiomatosis & Gorham's Disease Alliance (LGDA)
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Louise Murgia
Seasoned Director & Manager | Innovative Leader | Industry Influencer
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Lisa Klepper
Director of Patient Programs and Patient Registry at LGDA
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Tracy Milne
LGDA - Lymphangiomatosis and Gorham’s Disease Alliance
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Michael Kelly
Executive Director at Lymphangiomatosis & Gorham's Disease Alliance (LGDA)
Updates
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Calling all Pennsylvania rare disease advocates! Join us on October 1st for State Advocacy Day in Harrisburg, PA. This is your chance to meet with state legislators, share your story, and help advance critical healthcare policies that affect the rare disease community. Don’t miss this opportunity to make an impact—register today! 📅 Date: October 1st, 2024 📍 Location: Hilton Harrisburg & Pennsylvania State Capitol 🔗 bit.ly/4cTpGHc #RareDisease #AdvocacyDay #MakeADifference #HealthcarePolicy #RDLA #StateAdvocacyDay #CLAawareness #ComplexLymphaticAnomalies
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Opportunity Alert: Join the Patient Community Advisory Council (PCAC)! Are you driven to make a positive impact on the Complex Lymphatic Anomalies (CLA) community? We are seeking dedicated individuals with diverse experiences and perspectives to join the PCAC. Your contributions will directly influence CLA care, research, and advocacy initiatives. Ready to lead and make a difference? Apply today and be part of a global movement to improve the lives of those affected by CLA. 👉https://lnkd.in/gWgT4eNX #CLACare #PatientVoice #Advocacy #RareDisease #CLAawareness #ComplexLymphaticAnomalies
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The Million Dollar Bike Ride 2024 Pilot Grant Program offers a CLA research grant. Faculty-level researchers and senior scientists, this is your chance to push the boundaries of rare disease research. The grant is open to the international research community. Apply by September 20, 2024. Learn more here: bit.ly/MDBR2024RFA #RareDisease #ResearchFunding #Innovation #CLAawareness #CLAresearch #ComplexLymphaticanomalies Michael Kelly David Williams Miikka Vikkula
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Understanding Consensus of Care Guidelines Consensus of Care Guidelines are systematically developed recommendations by experts to ensure that all patients receive consistent, high-quality care based on current evidence. These guidelines are particularly important for Complex Lymphatic Anomalies (CLA) patients, who often face unique challenges in their care. 🔍 Learn more about the significance of these guidelines in our latest blog post: bit.ly/4763JU2 #CLA #PatientCare #MedicalGuidelines #HealthMatters #ComplexLymphaticAnomalies #CLAawareness
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Capillary lymphatic venous malformations (CLVM) are associated with significant morbidity, presenting a critical need for effective treatments. A recent study highlights the potential of sirolimus to improve quality of life and reduce complications in patients with CLVM. This research could change the treatment for these rare vascular disorders. Explore the findings and their clinical implications. Read more: bit.ly/3WNkkHa #Healthcare #RareDisease #CLVMResearch #ScienceSaturday
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In response to proposed NIH reforms, the LGDA and our coalition partners are advocating for the protection of specialized research institutes. These institutes, like NIDCR, play a critical role in advancing medical science by focusing on specific health challenges. Ensuring their continued existence is vital for the ongoing development of targeted therapies and innovations. Read more: bit.ly/3XbEOe5 #ResearchAdvocacy #CLAawareness #ComplexLymphaticAnomalies
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The Million Dollar Bike Ride 2024 Pilot Grant Program offers a CLA research grant. Faculty-level researchers and senior scientists, this is your chance to push the boundaries of rare disease research. The grant is open to the international research community. Apply by September 20, 2024. Learn more here: bit.ly/MDBR2024RFA #RareDisease #ResearchFunding #Innovation #CLAawareness #CLAresearch #ComplexLymphaticanomalies Michael Kelly David Williams Miikka Vikkula
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New Resource Alert for Healthcare Professionals! The Primary Care Guide on #ComplexLymphaticAnomalies is now available in Spanish. Enhance your practice with this essential tool. 📖 Access the guide in Spanish - bit.ly/4d4gwZI #PrimaryCare #RareDiseases #MedicalEducation David Williams Michael Kelly
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Rare diseases push us to think beyond boundaries and create new possibilities. Let’s keep challenging ourselves to find those breakthroughs that bring hope to every patient’s life. #RareDiseaseResearch #MedicalInnovation #Resilience #complexlymphaticanomalies #RareDiseaseAwareness
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