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
- Tweets1.7K
- Following261
- Followers572
- Likes467
Your generosity goes twice as far!
Gifts to ECDGA's Year-End Campaign will be MATCHED up to $90,000, supporting research, awareness, education, and patient support.
Donate: fundecd.org
#raredisease #ecdga #erdheimchester #yearendcampaign
erdheim-chester.org/the-matc…
19
An ECD diagnosis brings questions. Your gift helps families find support, resources, and community.
Support their next step at fundecd.org
#raredisease #ecdga #erdheimchester #yearendcampaign #histiocytosis
erdheim-chester.org/after-th…
118
Save the Date! Join the ECD community in Glasgow, Scotland, August 27–28, 2027, for the 12th Annual ECD Patient & Family Gathering.
#ECDGA #ErdheimChesterDisease #RareDisease #PatientCommunity #Glasgow2027 #SaveTheDate #TogetherWeMakeRareVisible
erdheim-chester.org/save-the…
2
80
Hydration matters, especially with ECD. Keep water handy, snack on watermelon & cucumber, and build small habits that support your well-being.
#raredisease #ecdga #erdheimchester
erdheim-chester.org/staying-…
65
You went above and beyond and because of you, hope goes further. Thank you for your generosity, dedication, and unwavering support of the ECD community. Together, we’re making a lasting difference.
#raredisease #ecdga #erdheimchester
erdheim-chester.org/thank-yo…
36
Today’s the last day! There’s still time to support the ECDGA Virtual Fun Run, Walk or Roll. Every donation helps advance research, education, and support for the ECD community. Finish strong with us!
#raredisease #ecdga #erdheimchester
erdheim-chester.org/today-is…
26
Only 48 hours left! Every donation is still being matched, doubling your impact for the ECD community. Don’t wait help us unlock the full match before time runs out.
#raredisease #ecdga #erdheimchester
erdheim-chester.org/only-48-…
39
Because of Team Rocky Mountain High, hope grows. Every mile and every effort strengthens the ECD community. Thank you for leading the way.
#ECDGA #VirtualFunRun #WalkOrRoll #TeamRockyMountainHigh #RareDisease #ErdheimChesterDisease #TogetherForECD
erdheim-chester.org/team-spo…
36
Every step, every donation, every shared story you make this community stronger. Thank you for standing with ECDGA and helping bring hope, support, and awareness to families around the world.
#raredisease #ecdga #erdheimchester
erdheim-chester.org/erdheim-…
24
Every step, every donation, every shared story you make this community stronger. Thank you for standing with ECDGA and helping bring hope, support, and awareness to families around the world.
#raredisease #ecdga #erdheimchester #FunRun
erdheim-chester.org/a-messag…
25
We’ve raised $6,545 toward our $10,000 match goal—and every donation is still being doubled. Help us unlock the full match and create an even greater impact for the ECD community.
#raredisease #ecdga #erdheimchester
erdheim-chester.org/double-y…
21
The finish line is in sight! This is your final chance to rally your team, boost your fundraising, and make every mile count for the ECD community. Let’s finish strong together.
#raredisease #ecdga #erdheimchester
erdheim-chester.org/final-we…
32
The clock is ticking only a few days left to double your impact. Help fund research, education, and support for the ECD community before the match ends.
#raredisease #ecdga #erdheimchester #RunWalkRollForECD #ECDAwareness #DoubleTheImpact #TeamECD
erdheim-chester.org/final-da…
34
Every dollar makes a difference. Small contributions add up to real impact supporting patients, advancing research, and strengthening the ECD community.
#raredisease #ecdga #erdheimchester #RunWalkRollForECD #ECDCommunity #FundraisingChallenge
erdheim-chester.org/every-do…
15
Double your impact today. Every gift helps advance research, expand patient support, and raise awareness for ECD and right now, every dollar goes twice as far.
#raredisease #ecdga #erdheimchester #RunWalkRollForECD #RareDiseaseAwarenes #DoubleYourImpact3
erdheim-chester.org/double-y…
28
Double your impact this week! Every dollar raised brings us closer to stronger support, greater awareness, and more hope for the ECD community. Now is the time to make every contribution count.
#raredisease #ecdga #erdheimchester
erdheim-chester.org/week-3-m…
30
Want to be featured? Share your Fun Run moments teams, miles, and meetups and you could be spotlighted during the event!
#raredisease #ecdga #erdheimchester #RunWalkRollForECD #ECDCommunity #FacesOfECD #TeamECD
erdheim-chester.org/show-us-…
24
Missed the ECDGA events—or want to revisit key moments? Now you can access expert insights, research updates, and global discussions anytime.
#raredisease #ecdga #erdheimchester #ECDAwareness
erdheim-chester.org/the-wait…
30
Week 2 Challenge is here!
Recruit 5+ teammates and earn a $150 bonus for your team. Invite your people and start building every step supports the ECD community.
#raredisease #ecdga #erdheimchester #RunWalkRollForECD #ECDAwareness #TeamChallenge #TeamECD
erdheim-chester.org/week-2-c…
1
35
Real progress in rare disease starts with conversations. At AAD, experts and future clinicians came together to share knowledge, ask questions, and push ECD awareness forward—one interaction at a time.
#Healthcare #MedicalEducation #ErdheimChesterDisease
erdheim-chester.org/mayo-cli…
1
55