ECD Global Alliance

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-regis…

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

Tomorrow is Rare Disease Day #raredisease #ecdga #erdheimchester #ecd #rareisneveralone #rarediseaseday #histiocytosis

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=…

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

Only a Few Days Until Rare Disease Day #raredisease #ecdga #erdheimchester #rareisnotalone #histiocytosis

Ziggy believes change starts with us #raredisease #ecdga #erdheimchester #ziggy #histiocytosis #rarediseaseday

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

Families affected by rare disease are experts in resilience. Ziggy and ECDGA are learning from them every day. #raredisease #ecdga #erdheimchester #ziggy #histiocytosis #rarediseaseday

Rare Disease isn't a Statistic #raredisease #ecdga #erdheimchester #rarediseaseday2026 #ziggy #hitiocytosis #ECD #raredoesnotmeanalone

Happy Valentine's Day #raredisease #ecdga #erdheimchester #rarediseaseday2026 #ziggy #hitiocytosis #ECD #raredoesnotmeanalone

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

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

Being Rare Can Feel Lonely #raredisease #ecdga #erdheimchester

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

Rare Disease Day #RareButNotAlone #RareDiseaseDay #Ziggy #ECDG #ECD #Histiocytosis

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 erdheim-chester.org/erdheim-cheste…

Final reminder: February 1, 2026 is the deadline for early bird registration, abstract submissions, award nominations, and financial assistance for the 2026 ECD Global Alliance Medical Symposiums. Don’t miss your chance to participate in Birmingham this sp erdheim-chester.org/final-reminder…