ECD Global Alliance

The ECD Global Alliance is the only nonprofit worldwide solely dedicated to people living with #ErdheimChester disease #histocytosis #histocyte #raredisease

[ECD Global Alliance @ECDGA]

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
https://t.co/9tSAubhAB9

[ECD Global Alliance @ECDGA]

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.
https://t.co/I7wxB7HmpI

[ECD Global Alliance @ECDGA]

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

[ECD Global Alliance @ECDGA]

Tomorrow is Rare Disease Day

#raredisease #ecdga #erdheimchester #ecd #rareisneveralone #rarediseaseday #histiocytosis

[ECD Global Alliance @ECDGA]

https://t.co/NOrRtXyFlw

[ECD Global Alliance @ECDGA]

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
https://t.co/0vgRHrSGLR

[ECD Global Alliance @ECDGA]

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

[ECD Global Alliance @ECDGA]

Only a Few Days Until Rare Disease Day

#raredisease #ecdga #erdheimchester #rareisnotalone #histiocytosis

[ECD Global Alliance @ECDGA]

Ziggy believes change starts with us

#raredisease #ecdga #erdheimchester #ziggy #histiocytosis #rarediseaseday

[ECD Global Alliance @ECDGA]

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
https://t.co/koCMivZlgc

[ECD Global Alliance @ECDGA]

Families affected by rare disease are experts in resilience. Ziggy and ECDGA are learning from them every day.

#raredisease #ecdga #erdheimchester #ziggy #histiocytosis #rarediseaseday

[ECD Global Alliance @ECDGA]

Rare Disease isn't a Statistic

#raredisease #ecdga #erdheimchester #rarediseaseday2026 #ziggy #hitiocytosis #ECD #raredoesnotmeanalone

[ECD Global Alliance @ECDGA]

Happy Valentine's Day

#raredisease #ecdga #erdheimchester #rarediseaseday2026 #ziggy #hitiocytosis #ECD #raredoesnotmeanalone

[ECD Global Alliance @ECDGA]

https://t.co/ww0surKPNJ

[ECD Global Alliance @ECDGA]

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

[ECD Global Alliance @ECDGA]

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

[ECD Global Alliance @ECDGA]

Being Rare Can Feel Lonely

#raredisease #ecdga #erdheimchester

[ECD Global Alliance @ECDGA]

#RareButNotAlone #RareDiseaseDay #Ziggy #ECDGA #ECD #Histiocytosis

[ECD Global Alliance @ECDGA]

Rare Disease Day

#RareButNotAlone #RareDiseaseDay #Ziggy #ECDG #ECD #Histiocytosis

[ECD Global Alliance @ECDGA]

As we step into 2026, we’re reflecting on a powerful year behind us. From global gatherings and research breakthroughs to community growth and shared stories, 2025 showed what’s possible when the ECD community moves forward together.

#RareDiseaseCommunity
https://t.co/A3CBE8Xci4