@LGDA_EU

The LGD Alliance Europe is dedicated to patient support, advocacy and research to find treatments and cures for lymphangiomatosis and Gorham's disease.

lgda.eu
Joined March 2016
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  • Following73
  • Followers103
75Media
DISH A friendly reminder! Our monthly The DISH (Drop in and Share) support group will meet on Saturday, August 13 at 10:00 am Eastern Time! Join here: us06web.zoom.us/j/9421021521… @LGDA_EU
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Looking forward to this conference on Vascular Anomalies in Brussels from 31 Jan to 3 Feb 2023, organized by the @VACure1 network! Deadline for abstract submission 15 Nov 2022. vacure-conference.net/
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Join Taylor and Liz, moderators for LGDA’s support groups, on their @NotSoRarePodcast as they share their experiences. ·podcasts.apple.com/us/podcas… · open.spotify.com/episode/5kg…... @LGDA_EU @NotSoRarePodcast
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LGD Alliance Europe retweeted
Mike kelly@Mikekel6769953615 Jun 2022
Big THANK YOU to all who made the Million Dollar Bike Ride such a special experience. @LGDAlliance @LGDA_EU
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LGD Alliance Europe retweeted
Mike kelly@Mikekel6769953615 Jun 2022
CLA warriors riding in the MDBR last Saturday in Philly. Thank you for all you do for our CLA community😀🙏 @LGDAlliance @LGDA_EU
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LGD Alliance Europe retweeted
Mike kelly@Mikekel676995367 Jun 2022
youtube.com/watch?v=GRKOyeaP… Sophie Ferry explains how research funded by Million Dollar Bike Ride has changed her life. Please help team LGDA, LMI and LGDA Europe raise funds for life changing research for those living with complex lymphatic anomalies @LGDAlliance @LGDA_EU

Sophie Ferry

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Dr. Michael Dellinger to present "New Diagnostic Tools and Treatment for Central Lymphatic Abnormalities". A webinar series on complex lymphatic anomalies. Watch the recorded webinar. (link to youtube.com/watch?v=1ZCx8UrE…) @LGDA_EU #rarediseases #czinitiative #RareAsOne #CZIscience
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Bikers Wanted! Plan on attending UPenn’s 2022 Million Dollar Bike Ride on June 11th. Don’t forget to register at milliondollarbikeride.org/re… Can’t attend in person, there is a virtual spin class on June 6th at 7:00 pm. @LGDA_EU #MBDR2022
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Today is #LGDAwarenessDay! Join our celebration! Become a member and make a small monthly contribution that will enable us to keep working to support, educate and give hope to patients with CLA's and their families. Become a member here: lgda.eu/get-involved
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EXTRA! EXTRA! READ ALL ABOUT IT! May 26 is Awareness Day and LAUNCH DAY for special initiatives that honor our origins and patient community! @LGDA_EU
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The Orphan Disease Center’s MDBR Young Investigator grant is a $25,000 award that supports early career researchers pursuing research ideas related to lymphatic anomalies. orphandiseasecenter.submitta… #MDBR2022 #UPENN #research #rarediseases @LGDA_EU
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You can also support Team CLA Warriors in the 2022 Million Dollar Bike Ride event. Want to know how? Download the Team CLA Warriors toolkit here: ​ drive.google.com/file/d/1_XT…
Share your experiences finding medical care for vascular anomalies in a study being conducted by Bryan Sisk, MD and Anna Kerr, PhD. Must be over 18 years of age or older. Open to US and non-US participants. Questions – Contact (link kerrcommlab.wixsite.com/vaco…) @LGDA_EU
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We are gearing up to better treatments and cures: The LGDA Europe is joining forces with LGDA USA and LMI to support Team CLA Warriors in the 2022 Million Dollar Bike Ride event. Get involved and be part of the MDBR here: secure.givelively.org/donate…
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Special Topic Support Group May 28 at 11:00 am Eastern Time Sponsored by the Young Adults and Millennial Support Groups. This special support session is dedicated to family planning and reproductive health. Register Today! us06web.zoom.us/meeting/regi… @LGDA_EU #rarediseases
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Share your experiences finding medical care for vascular anomalies in a study being conducted by @Sisk_MD and @DrAnnaKerr Must be over 18 years of age or older. Open to US and non-US participants. kerrcommlab.wixsite.com/vaco… @LGDA_EU #rarediseases #WUSTL
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Thank you @ISSVA_org for the great conference in Vancouver. @vascern was well represented at the conference. See you soon again and keep up the good work for our CLA patients. #networking for #lymphatic and #vascularanomalies #issva22 @CMTCOVM @hevas_nl
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Worldwide LGD Awareness Day in on May 26. Join us in sharing our CLA story. Share your stories using #lgdawareness. lgdalliance.org/legacies-2/j… #LGDAwareness @LGDA_EU #rarediseases
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LGD Alliance Europe retweeted
VASCERN@vascern13 May 2022
We're proud of the work our patient advocates are doing for the patient community, and we're looking forward to hearing about the #ISSVA conference. @hevas_nl @CMTCOVM @LGDA_EU
HEVAS@hevas_nl12 May 2022
Patient advocates unite at ISSVA @CLOVESSyndrome @projectfava @CMTCOVM @LGDA_EU 🧬
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Come, ask questions, and share your experiences! Join us for our DISH monthly support group on Saturday, May 14 at 10:00 am ET. Open to our global CLA community of both patients and parents. facebook.com/events/s/dish-d… @LGDA_EU #rarediseases #supportgroups
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