The ECD Global Alliance is the only nonprofit worldwide solely dedicated to people living with #ErdheimChester disease #histocytosis #histocyte #raredisease
DeRidder, LA | Global
Joined April 2014
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ECD Global Alliance retweeted
Today we at hematology oncology department Riyadh, Saudi Arabia celebrated the opening of the first histiocytic clinic in the region
I feel so proud @ECDGA @NGHAnews @SSBMT @HistiocyteSoc
ECD Global Alliance retweeted
Iam pleased to share with you that a dedicated adult histiocytic clinic will open next Tuesday 17 th September 24 at KAMC Riyadh Ngha,feel free to refer any Saudi adult patient with histiocytic disease
For any queries email. [email protected] @SSBMT
@NGHAnews @ECDGA
ECD Global Alliance retweeted
In honor of #ECDAwarenessWeek here are some things #neurologists should know about this rare disease. You may be thinking this is medical oncology, why me? Even for general neuro, there are many high yield points. Come along, it is pointless to RECIST (thank you James Earl Jones)
Sharing info about ECD is a powerful way to raise awareness and educate those unfamiliar with this rare condition. These efforts demystify the disease, highlight the challenges, and emphasize the importance of early diagnosis and research #ECDGA #ECDAwarenessWeek #MoveForECD
ECD Global Alliance retweeted
Histiocytosis Awareness Month - Do you know XG/JXG? Share with your family and friends, ask others to share with their networks - help us ensure more people will Know Histio #ikNOwJXG #ikNOwXG Learn more at histio.org/histiocytic-disor…
ECD Global Alliance retweeted
Je vais garder ça sous le coude quand on me demande quels sont les symptômes de ma maladie.
Sharing info about ECD is a powerful way to raise awareness and educate those unfamiliar with this rare condition. These efforts demystify the disease, highlight the challenges, and emphasize the importance of early diagnosis and research #ECDGA #ECDAwarenessWeek #MoveForECD
ECD Global Alliance retweeted
ECD Awareness Week starts now. @ECDGA
ECD Awareness Week is here! Please help us raise awareness for ECD by registering for our Virtual Fun Run/Walk/Roll, sharing info with networks, and following our daily updates. Every step, share, and conversation makes a difference! #MoveForECD #ECDAwarenessWeek #ECDGA
ECD Global Alliance retweeted
Please share with friends & colleagues who might be interested! Thank You! @HPSNetwork @EparentConnect @teaminspire @lukebrosen @OnceUponAGene @PatientWorthy @ParentProjectMD @JettFoundation @CureCRB1 @RareByDesign @RareNewEngland @ECDGA @LORIGORSKI9 @KyleABryant @cysticfibrosis
Free Virtual Presentation Aug. 23rd 6:30 pm EST:
👉Adaptive Sports & Recreation for #Rare & #Chronic Conditions
With: Abbey Hauser, young adult #raredisease advocate & certified personal trainer
RSVP: ourodyssey.org/topic-specifi…
@JFCConsultants @TravereRare #AdaptiveSports
ALT The graphic includes a photo of a smiling Abbey Hauser on a hike in the woods with hiking gear and elbow crutches. The logos in the graphic include Travere and Our Odyssey. Presentation information is included: Adaptive Sports & Recreation for Rare & Chronic Conditions, With: Abbey Hauser, August 23rd at 6:30 p.m. eastern time. R.S.V.P at our odyssey dot org.
ECD Global Alliance retweeted
Rosai Dorfman disease educational opportunity for medical professionals on Saturday July 9th at 11am EST.
Register here: ow.ly/2OQq50JJzal
Learn more about MHG here: ow.ly/Igim50JJzan. Email [email protected] to receive an e-invite to the full congress.
ALT Rosai Dorfman Webinar hosted by Dr. Garuav Goyal and the Mumbai Hematology Group. Saturday July 9th at 11am, EST.
ECD Global Alliance retweeted
This is Anya’s story. The magazine did a wonderful job capturing both her tenacity and how doctors and pathologists at @MayoClinic tried everything they could — and then they tried something that no one had ever tried before. And it worked. @ECDGA discoverysedge.mayo.edu/2022…
ECD Global Alliance retweeted
New Webinar Coming up → Nutrition and Immunity
January 23rd at 4PM EST
⠀
Join our free webinar from our Nutrition Webinar Series with Michelle MacDonald.
The last day to register is Saturday, January 22nd at midnight.➡️ conta.cc/3IhsGOq
ECD Global Alliance retweeted
🚨ʙʀᴇᴀᴋɪɴɢ ɴᴇᴡꜱ
Meet the top 9 rare disease research prospects that will be selected at 2022 Young Investigator Draft presented by @CSLBehring! Each researcher selected receives $20,000! Learn about them here --> upliftingathletes.org/yid
ECD Global Alliance retweeted
Grateful to be part of this multi-disciplinary collaboration @IRPatNIH & partner centres. Hoping this survivorship guidance will help spread awareness and improve care for patients with #histiocytosis @ECDGA @Histiocytosis @JNCCN
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ECD Global Alliance retweeted
Diabetes insipidus is often the first sign of a histiocytosis and untreated it can result in life threatening electrolyte imbalances.
ECD Global Alliance retweeted
Proud to share this publication from our star IM resident @AHazimMD addressing the critical question of outcomes in pulmonary LCH in isolation and as part of multi-system disease @Histiocytosis @HistiocyteSoc @ECDGA.
Live in the American Journal of Hematology! onlinelibrary.wiley.com/doi/…. Thank you @RonaldGoMD and @GauravGoyalMD for your mentorship throughout this project. #lch #Langerhans @AjHematology @GordonRuan @MayoMN_IMRES
