The ECD Global Alliance is the only nonprofit worldwide solely dedicated to people living with #ErdheimChester disease #histocytosis #histocyte #raredisease
Joined April 2014
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Jun 11
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-…
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Jun 10
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…
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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…
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Mar 31
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…
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Mar 12
Registration is now open for the 2026 Patient & Family Gathering in Birmingham, Alabama, April 29–30. Join patients, families, and caregivers to connect, learn from experts, and explore the latest research. Reserve your hotel by April 6.
erdheim-chester.org/reminder…
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Feb 28
Today is Rare Disease Day. I’m Ziggy and along with ECDGA I’m proud to stand with every individual and family affected by rare disease. Together, we are rare—but never alone.
#raredisease #ecdga #erdheimchester #ecd #rareisneveralone #rarediseaseday #histiocytosis
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Feb 27
Tomorrow is Rare Disease Day
#raredisease #ecdga #erdheimchester #ecd #rareisneveralone #rarediseaseday #histiocytosis
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Feb 26
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Feb 26
Every ECD journey is unique. There is no one-size-fits-all diet, and nutrition should always complement, not replace, medical treatment. Listening to your body and working closely with your healthcare team is key. If you do not have a nutritionist on your
youtube.com/playlist?list=PL…
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Feb 25
Rare Disease Day is almost here
ECDGA is proud to stand with individuals and families living with rare diseases today and every day.
By sharing this post, you help raise awareness, spark conversations, and remind others that rare does not mean alone. Awareness leads to understan
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Feb 23
Only a Few Days Until Rare Disease Day
#raredisease #ecdga #erdheimchester #rareisnotalone #histiocytosis
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Feb 20
Ziggy believes change starts with us
#raredisease #ecdga #erdheimchester #ziggy #histiocytosis #rarediseaseday
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Feb 19
Sharing Strength: Rebecca’s Story with ECD-Ziggy recently had the pleasure of interviewing Rebecca Boone about her journey with ECD. Rebecca shared her personal experiences, challenges, and the impact ECD has had on her life. Her story is a powerful remind
youtu.be/eDopbZWoECc
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Feb 18
Families affected by rare disease are experts in resilience. Ziggy and ECDGA are learning from them every day.
#raredisease #ecdga #erdheimchester #ziggy #histiocytosis #rarediseaseday
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Feb 16
Rare Disease isn't a Statistic
#raredisease #ecdga #erdheimchester #rarediseaseday2026 #ziggy #hitiocytosis #ECD #raredoesnotmeanalone
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Feb 14
Happy Valentine's Day
#raredisease #ecdga #erdheimchester #rarediseaseday2026 #ziggy #hitiocytosis #ECD #raredoesnotmeanalone
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Feb 13
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Feb 12
Rare doesn't mean invisible. Behind every rare diagnosis is a family navigating strength, fear, love, and hope. ECDGA is here to walk beside them.
#raredisease #ecdga #erdheimchester #rarediseaseday2026 #ziggy #hitiocytosis #ECD #raredoesnotmeanalone
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Feb 11
Awareness Leads to Research and Research Leads to Hope - Ziggy Fact: Many rare diseases still have no cure—but awareness leads to research, and research leads to hope.
#raredisease #ecdga #erdheimchester #rarediseaseday2026 #ziggy #hitiocytosis #ECD #raredoesnotmeanalone
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