Top Tweets for #ENDecd
As #ECDawarenessWeek comes to a close, we need to continue spreading the word! Keep telling your story to the world, they will listen! Together we can make a difference! #ENDecd #Awareness #TogetherWeCan
#ErdheimChester disease is difficult to diagnose, which can be a long, long road. Learn about Noah’s story at https://t.co/KDwLlXTEvV #underdiagnosed #endECD
After your ECD diagnosis, were you able to reach out to the first doctor(s) you came across to update them? Here’s a letter template to help with this process: https://t.co/O77bugBci2
#ECDawareness #endECD #educate
#endECD Awareness week is here! Please help share our facts coming your way this week and send us any good news you would like us to share!
We can’t do it alone! The ECD Global Alliance and its members need your help to #endECD! Education and awareness are key to a better future for patients and families fighting this rare #bloodcancer. We hope you decide to join us next week to spread the word!
#ENDECD Awareness Week is right around the corner! Stock up on your Erdheim-Chester Disease Gear! Many options are available for t-shirts, hoodies, baseball T-shirts and long-sleeved shirts. Order at https://t.co/pW2gW2aHuF to make sure you can show it off for #ECDAwarenessWeek
The end of Erdheim-Chester Disease Awareness Week is here, but we don’t have to stop educating! All year we work to share your stories and educate medical professionals, and we challenge you to do the same! #endECD #ECDawareness #histio
Because Erdheim-Chester Disease is so rare and difficult to diagnose, it may be underdiagnosed or misdiagnosed frequently. ECD most often occurs in adults during middle age; it is very rare in children. There are slightly more males than females diagnosed with ECD. #endECD
Doctors and advocates are pulling together this week to bring Erdheim-Chester Disease to light. Thank you to all who educate others! Show us your ECD Super Supporters & Awareness Champions! @GauravGoyalMD @MSK_Histio @MayoClinic #endECD #ECDawareness
Awareness is improving! Doctors are becoming more familiar with #ErdheimChesterDisease, not only because of the ECD Global Alliance, but because of YOU! Keep educating others about ECD! @IJuvianee @NIHClinicalCntr @NIH #endECD #ECDAwarenessWeek
ECD is a rare blood cancer. Community Awareness Champion Becca Winthrop and @UFHealth's Dr. Ali Ataya are spreading the word. Ataya is lead physician of UF's ECD Referral Care Center, 1 of 35 @ECDGA Centers of Excellence. Learn more: https://t.co/TQpNdDQABS #ECDAwareness
The average time for a patient to find a diagnosis from the time they begin having symptoms is 5 to 7 years. When irreversible organ and nerve damage could occur. #endECD #RareDisease #SharingIsKey #histio
Why focus on awareness? Take time to hear Barry Atnip’s story of how he discovered that he was living with ECD.
https://t.co/oY3xgEVbFf
#endECD #ECDawareness #ECD #ECDcommunity #ErdheimChester #RareDisease #SharingIsKey #ShareYourStory #histio #WeCANendECD
We are kicking ECD Awareness Week w The Importance of Early Detection. @GauravGoyalMD w UAB talks about diagnosing #ErdheimChester disease patients as early as possible. Please help spread the word this #ECDAwarenessWeek by sharing! #endECD https://t.co/pV4Q5HpXUe
New blog post:
The Importance of Volunteer Support
https://t.co/mjNUqDeet1
#endECD #volunteerism #erdheimchesterdisease
All the power we need, we already have within ourselves! ✨
#ECDawareness #ECD #ECDcommunity #EndECD #ErdheimChester #ECDsupport #RareDisease #RareDiseaseAwareness
We're wishing all of our friends, families, warriors, and supporters a very Merry Christmas and Happy New Year!
#ECDawareness #ECD #ECDcommunity #EndECD #ErdheimChester #ECDsupport #RareDisease #RareDiseaseAwareness
President, @KathyGBrewer, held an #ErdheimChester #VirtualWalk this weekend with friends and local supporters! "Research continues and patient outcomes are improving as a result of your support!" #endECD #DeRidder #raredisease
The ECD Virtual Run/Walk sponsors went a step further in their virtual run during the recent Father's Day to celebrate their dad and to support his fight against ECD. Read more about Barry's triumphs in our blog! https://t.co/bXjnh9TsA3 #erdheimchester #endECD
If you are caring for a loved one with ECD, find support during our ECD Caregiver Virtual Chat on Saturday, July 10, 2021, at 9:00 a.m. Central Time
Register here for free: https://t.co/7ysBffLLZb
#caregiving #raredisease #endECD #erdheimchester
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