LGDAlliance (@lgdalliance) 's Twitter Profile
LGDAlliance

@lgdalliance

Patient-driven solutions for complex lymphatic anomalies: GLA, GSD, KLA, CCLA • Support-Research-Education • Somatic mutations PIK3/mTor & RAS/MAPK pathways

ID: 337722294

linkhttp://lgdalliance.org calendar_today18-07-2011 13:46:10

689 Tweet

293 Followers

120 Following

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📢 CLA Awareness Day is coming! 🗓 MAY 26TH Join us as we shine a light on #ComplexLymphaticAnomalies (CLAs) Mark your calendars and help us spread the word!

📢 CLA Awareness Day is coming!  🗓 MAY 26TH  Join us as we shine a light on #ComplexLymphaticAnomalies (CLAs)  Mark your calendars and help us spread the word!
LGDAlliance (@lgdalliance) 's Twitter Profile Photo

New guide alert! #FamilyPlanning while living with a #VascularAnomaly? This expert-informed resource covers pregnancy, contraception, and postpartum care. 💙 Empower your journey with knowledge. 🔗 bit.ly/4iNmcc5 #lymphaticmalformations #CLAawareness #LymphaticHealth

New guide alert!
#FamilyPlanning while living with a #VascularAnomaly? This expert-informed resource covers pregnancy, contraception, and postpartum care.

💙 Empower your journey with knowledge.
🔗 bit.ly/4iNmcc5

#lymphaticmalformations #CLAawareness #LymphaticHealth
LGDAlliance (@lgdalliance) 's Twitter Profile Photo

Transition challenges cross borders—and diseases. ERN EURO-NMD's meeting shared transition care tools that VACs & other #RareDisease programs can adapt to improve outcomes. 🔗 ow.ly/Jgjr50VNMRq What makes a successful youth-to-adult care transition? Share your thoughts!

Transition challenges cross borders—and diseases. 

ERN EURO-NMD's meeting shared transition care tools that VACs & other #RareDisease programs can adapt to improve outcomes.
🔗 ow.ly/Jgjr50VNMRq

What makes a successful youth-to-adult care transition? Share your thoughts!
LGDAlliance (@lgdalliance) 's Twitter Profile Photo

Mandibular osteolysis in a 14-year-old → #GorhamStout disease. Dentists are vital in early diagnosis: loose teeth, bone loss, and unexplained fractures could be more than routine issues. 👉 bit.ly/3ENbIM3 #RareDisease #OralSurgery #OralHealth #LymphaticMalformation

Mandibular osteolysis in a 14-year-old → #GorhamStout disease. Dentists are vital in early diagnosis: loose teeth, bone loss, and unexplained fractures could be more than routine issues.

👉 bit.ly/3ENbIM3

#RareDisease #OralSurgery #OralHealth  #LymphaticMalformation
LGDAlliance (@lgdalliance) 's Twitter Profile Photo

CLA Awareness Day is just around the corner, May 26th. — Help make an impact; like our posts, share them with your followers, comment, and tag a friend to help us reach more people. Learn more: bit.ly/2025CLAawarene… #complexlymphaticanomalies

CLA Awareness Day is just around the corner, May 26th. — Help make an impact; like our posts, share them with your followers, comment, and tag a friend to help us reach more people.  Learn more: bit.ly/2025CLAawarene… #complexlymphaticanomalies
LGDAlliance (@lgdalliance) 's Twitter Profile Photo

🚴‍♂️ Ride. Fund. Cure. Join #MDBR2025 & help raise $30K for the Alfie Milne Young Investigator Award—fueling the next generation of CLA researchers. Your support = real breakthroughs 🧬 KLA modeling 🧪 Precision medicine for LMs 👉bit.ly/2025TEAMCLA #LymphaticMalformation

🚴‍♂️ Ride. Fund. Cure.
Join #MDBR2025 & help raise $30K for the Alfie Milne Young Investigator Award—fueling the next generation of CLA researchers.

Your support = real breakthroughs
🧬 KLA modeling
🧪 Precision medicine for LMs
👉bit.ly/2025TEAMCLA 

#LymphaticMalformation
LGDAlliance (@lgdalliance) 's Twitter Profile Photo

Apply for the Alfie Milne Young Investigator Award to advance your research in #complexlymphaticanomalies! Deadline for LOI: May 30, 2025, by 11:59 PM EST. Don't miss this opportunity—share to spread the word! bit.ly/AlfieMilneYIA #lymphaticmalformations #lymphaticresearch

Apply for the Alfie Milne Young Investigator Award to advance your research in #complexlymphaticanomalies! Deadline for LOI: May 30, 2025, by 11:59 PM EST. Don't miss this opportunity—share to spread the word! bit.ly/AlfieMilneYIA

#lymphaticmalformations #lymphaticresearch
LGDAlliance (@lgdalliance) 's Twitter Profile Photo

Caregiving is demanding—and your health matters too. Check out our latest blog on recognizing caregiver stress and finding balance. Includes a link to trusted self-assessment tools. 🔗 ow.ly/YqS350VV7IJ #CLAawareness #LymphaticMalformations #MentalHealthAwareness

Caregiving is demanding—and your health matters too.

Check out our latest blog on recognizing caregiver stress and finding balance. Includes a link to trusted self-assessment tools.

🔗 ow.ly/YqS350VV7IJ

#CLAawareness #LymphaticMalformations #MentalHealthAwareness
LGDAlliance (@lgdalliance) 's Twitter Profile Photo

The Alfie Milne Young Investigator Award fuels #CLAresearch —thanks to YOUR MDBR donations, recipients are now publishing, presenting, & pushing science forward. Let’s raise $30K for the next breakthrough. Donate: bit.ly/2025TEAMCLA Learn: bit.ly/43wfgdY

The Alfie Milne Young Investigator Award fuels #CLAresearch —thanks to YOUR MDBR donations, recipients are now publishing, presenting, & pushing science forward. 

Let’s raise $30K for the next breakthrough.
Donate: bit.ly/2025TEAMCLA
Learn: bit.ly/43wfgdY
LGDAlliance (@lgdalliance) 's Twitter Profile Photo

📅 May 26 is #CLAAwarenessDay! Join us to raise awareness for #ComplexLymphaticAnomalies. 💙 Like, comment & share 📲 Tag a friend 🖼️ Download & post graphics: bit.ly/2025CLAawarene… Every action matters. #RareIsStrong #CLAcommunity #CLAawareness #lymphaticmalformation

📅 May 26 is #CLAAwarenessDay!
Join us to raise awareness for #ComplexLymphaticAnomalies.

💙 Like, comment & share
📲 Tag a friend
🖼️ Download & post graphics: bit.ly/2025CLAawarene…

Every action matters. 

#RareIsStrong #CLAcommunity #CLAawareness #lymphaticmalformation
LGDAlliance (@lgdalliance) 's Twitter Profile Photo

🎶 Don’t miss it! June 1, Lynbrook, NY — A Tribute to Don K. Reed! Enjoy classic oldies & support CLA patients. 💙 🎟️ $40 donation | St. Mary - Maris Stella Council #2228 – Knights of Columbus | Call Ken 516-816-3045 or email [email protected] #LGDA #OldiesConcert #CLAawareness

🎶 Don’t miss it! June 1, Lynbrook, NY — A Tribute to Don K. Reed!
Enjoy classic oldies & support CLA patients. 💙
🎟️ $40 donation | St. Mary - Maris Stella Council #2228 – Knights of Columbus  | Call Ken 516-816-3045 or email kenkojak1@aol.com

#LGDA #OldiesConcert #CLAawareness
LGDAlliance (@lgdalliance) 's Twitter Profile Photo

Tomorrow is CLA Awareness Day! If you haven’t already, head over to the LGDA website to download your awareness graphics and help us shine a light on #complexlymphaticanomalies: bit.ly/2025CLAawarene…

Tomorrow is CLA Awareness Day! If you haven’t already, head over to the LGDA website to download your awareness graphics and help us shine a light on #complexlymphaticanomalies: bit.ly/2025CLAawarene…
LGDAlliance (@lgdalliance) 's Twitter Profile Photo

Today is #CLAawarenessDay! Let’s shine a light on #ComplexLymphaticAnomalies. Get involved: Like, share & comment. Download graphics at LGDA’s site : bit.ly/2025CLAawarene…. Update your profile. Share your story. Together, we’re stronger. #LGDA #RareDiseaseAwareness

Today is #CLAawarenessDay!  Let’s shine a light on #ComplexLymphaticAnomalies. 
Get involved:  Like, share & comment.  Download graphics at LGDA’s site : bit.ly/2025CLAawarene….  Update your profile.  Share your story.  Together, we’re stronger. #LGDA #RareDiseaseAwareness
LGDAlliance (@lgdalliance) 's Twitter Profile Photo

Today is #CLAawarenessDay! To kick off the day, we’re proud to share this powerful video from members of the #complexlymphaticanomalies community - bit.ly/2025CLAawarene… #LymphaticHealth #LymphaticDisorders #lymphaticmalformation #vascularmalformation

LGDAlliance (@lgdalliance) 's Twitter Profile Photo

#CLAAwarenessDay - Raising awareness of #ComplexLymphaticAnomalies. (CLAs) are rare disorders that affect the lymphatic system: Learn more in our Patient & Family Guide, available in 11 languages: bit.ly/CLAGuideBook

#CLAAwarenessDay - Raising awareness of #ComplexLymphaticAnomalies.   (CLAs) are rare disorders that affect the lymphatic system: Learn more  in our Patient & Family Guide, available in 11 languages: bit.ly/CLAGuideBook
LGDAlliance (@lgdalliance) 's Twitter Profile Photo

#CLAAwareness Day. Raising awareness of #complexlymphaticanomalies. The LGDA Support Group and our Peer-to-Peer Support Program are here to connect new and existing members of the CLA community. Sign up here: bit.ly/CLASupportServ…

#CLAAwareness Day. Raising awareness of #complexlymphaticanomalies.  The LGDA Support Group and our Peer-to-Peer Support Program are here to connect new and existing members of the CLA community. Sign up here: bit.ly/CLASupportServ…
LGDAlliance (@lgdalliance) 's Twitter Profile Photo

#CLAAwarenessDay Education is key in the fight against #ComplexLymphaticAnomalies. That's why the LGDA is developing Consensus of Care Guidelines—to ensure patients worldwide receive consistent, expert care. To learn more: bit.ly/3YZTtZz

#CLAAwarenessDay Education is key in the fight against #ComplexLymphaticAnomalies. That's why the LGDA is developing Consensus of Care Guidelines—to ensure patients worldwide receive consistent, expert care.  To learn more: bit.ly/3YZTtZz
LGDAlliance (@lgdalliance) 's Twitter Profile Photo

#CLAAwarenessDay Living with a #ComplexLymphaticAnomaly doesn’t just affect the body—it impacts mental health. The fear, isolation, and unknowns take a toll on patients and families. Visit our Mental Health Resources page: 👉 bit.ly/4jXhvNT

#CLAAwarenessDay Living with a #ComplexLymphaticAnomaly doesn’t just affect the body—it impacts mental health. The fear, isolation, and unknowns take a toll on patients and families. Visit our Mental Health Resources page:  👉 bit.ly/4jXhvNT
LGDAlliance (@lgdalliance) 's Twitter Profile Photo

As we close #CLAAwarenessDay, we want to say a heartfelt thank you to the entire #ComplexLymphaticAnomalies community; patients, families, volunteers, and the medical and scientific community. Your are the heartbeat of everything we do. Learn more: lgdalliance.org

As we close #CLAAwarenessDay, we want to say a heartfelt thank you to the entire #ComplexLymphaticAnomalies community; patients, families, volunteers, and the medical and scientific community.  Your are the heartbeat of everything we do.  Learn more: lgdalliance.org
LGDAlliance (@lgdalliance) 's Twitter Profile Photo

LOI DEADLINE IN TWO DAYS - May 30, 2025, by 11:59 PM EST. 👉 Apply for the Alfie Milne YIA to advance your research in #complexlymphaticanomalies! Don't miss this opportunity—share to spread the word! bit.ly/AlfieMilneYIA #lymphaticmalformations #lymphaticresearch

LOI DEADLINE IN TWO DAYS - May 30, 2025, by 11:59 PM EST.

👉 Apply for the Alfie Milne YIA to advance your research in #complexlymphaticanomalies! Don't miss this opportunity—share to spread the word! bit.ly/AlfieMilneYIA

#lymphaticmalformations #lymphaticresearch