LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC

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Patient-driven solutions for complex lymphatic anomalies: GLA, GSD, KLA, CCLA • Support-Research-Education • Somatic mutations PIK3/mTor & RAS/MAPK pathways Patient advocacy group dedicated to patient driven solutions for complex lymphatic anomalies We connect patients and families to peers and networks of care, partner to advance new research, and educate the medical community to help all people navigating complex lymphatic anomalies have hope for a healthier tomorrow.

Founded

2007

Facebook

2600

X (Twitter)

296

Address

Saint Petersburg

Address: 7901 4th St. North, Saint PetersburgWeb: Sign in to see organisation websiteFacebook: LGDAllianceX (Twitter): LGDAllianceVolunteers: 25Revenue: 271042ICO: 261224181

Complex Lymphatic Anomalies Learn more February 28 LOIs due March 21 2025 Get familiar with the CLA Community LGDA ensurespatients with complex lymphatic anomalies CLAs have the comprehensive support they need from peer medical and scientific communities to lead longer higherquality lives. Learn more and get involved. Patients and families can access resources services and support. Take a look.

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Renee

It's inspiring to see how this community brings hope and healing to patients and families facing these challenges. Let’s continue to spread awareness and advocate for the research that is so desperately needed! 🌟 #TogetherForChange #CLAsMatter

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LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC

💙 Sixteen-year-old Emiliano, a 16 year old, from Guatemala was first thought to have a simple fracture after a karate injury. But when further tests revealed his bone was unusually thin, he was eventually diagnosed with Gorham-Stout disease (GSD)—a rare condition that weakens bones. After surgery and physical therapy, Emiliano recently started sirolimus treatment and is bravely adjusting to the side effects.

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Clara

- How can we leverage social media and online platforms to educate the public about lymphangio-matosis and Gorham's disease, and the importance of supporting research for these rare conditions?

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LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC

🌍 Today is International Day of Charity – a day to celebrate the power of giving. 💛 Originally a Hungarian civil society initiative to honor Mother Teresa on the anniversary of her passing, September 5 became a worldwide platform for charitable action when the UN declared it an international holiday in 2012. Mother Teresa’s legacy reminds us that even small acts of charity can make a lasting impact, alleviating suffering and creating more inclusive, resilient communities.

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Victor

So grateful for the dedication and support from the LYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC! Together, we can raise awareness and make a difference for those affected by complex lymphatic anomalies. 💙 #RareDiseaseDay #SupportTheCause

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Simone

- What innovative fundraising strategies have proven effective in raising awareness and resources for patients with complex lymphatic anomalies, and how can we implement them in our advocacy efforts?

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