Erdheim-Chester Disease Global Alliance

Erdheim-Chester Disease Global Alliance Erdheim-Chester Disease Global Alliance | Dedicated to awareness, support, education, and research for the rare disease ECD worldwide.

For many people with ECD, the journey to a diagnosis can take years. Research shows an average of 4.2 years from the fir...
09/05/2026

For many people with ECD, the journey to a diagnosis can take years. Research shows an average of 4.2 years from the first symptoms to an ECD diagnosis, highlighting why greater awareness and recognition matter. 💙💚

Ziggy Knows... People with ECD spend years searching for answers. Research has shown that after symptoms first appear, it takes an average of 4.2 years to g ...

ECD can affect different parts of the body, which means symptoms can vary widely from person to person. Learning about t...
09/04/2026

ECD can affect different parts of the body, which means symptoms can vary widely from person to person. Learning about the common signs and symptoms helps build greater understanding and awareness of this ultra-rare disease. 💙💚

Ziggy Knows... There isn't one symptom that defines ECD. Some people experience bone pain, fatigue, excessive thirst, balance problems, skin changes, ...

ECD is considered ultra-rare. In the U.S., researchers found that about 1 to 2 out of every 10 million people were newly...
09/03/2026

ECD is considered ultra-rare. In the U.S., researchers found that about 1 to 2 out of every 10 million people were newly diagnosed with ECD during 2021 and 2022. That’s why raising awareness matters. 💙💚

Ziggy Knows... ECD is considered ultra-rare. Researchers found that about 1 to 2 out of every 10 million people were newly diagnosed with ECD in the US duri ...

What is Erdheim-Chester Disease? ECD is an ultra-rare blood cancer that can affect many parts of the body and can look d...
09/02/2026

What is Erdheim-Chester Disease? ECD is an ultra-rare blood cancer that can affect many parts of the body and can look different from person to person. Learn more and help us raise awareness. 💙💚

Ziggy Knows... Erdheim-Chester Disease (ECD) is an ultra-rare blood cancer that can affect many different parts of the body, including the bones, heart, bra ...

Let’s learn together with Ziggy! Throughout September, follow along as we share facts, answer common questions, and high...
09/01/2026

Let’s learn together with Ziggy! Throughout September, follow along as we share facts, answer common questions, and highlight stories from the Erdheim-Chester Disease community. 💙💚

Hi! I'm Ziggy, your ECD Awareness Guide. Throughout September, I'll be sharing facts, answering common questions, introducing inspiring members of ...

ECD Awareness Month is here! This September, join the global ECD community as we raise awareness, share knowledge, stren...
09/01/2026

ECD Awareness Month is here! This September, join the global ECD community as we raise awareness, share knowledge, strengthen connections, and help more people learn about Erdheim-Chester Disease. Every voice can help make rare visible. 🌍

ECD Awareness Month is here! In this special message, ECD Global Alliance Board President Diane Schriner shares how learning, connecting, and raising awaren ...

Health Tip: Physical activity can support overall well-being, including strength, energy, mood, and quality of life. Fin...
08/12/2026

Health Tip: Physical activity can support overall well-being, including strength, energy, mood, and quality of life. Find activities that work for you and discuss what is appropriate for your individual needs with your healthcare provider.

Finding Movement That Works for You Living with Erdheim-Chester disease (ECD) often means adjusting to changes in energy, mobility, balance, strength, or en ...

Save the Date! The 12th Annual ECD Patient & Family Gathering is coming to Glasgow, Scotland, August 27–28, 2027. Join o...
08/11/2026

Save the Date! The 12th Annual ECD Patient & Family Gathering is coming to Glasgow, Scotland, August 27–28, 2027. Join our global ECD community for connection, learning, encouragement, and support.

We're excited to announce that the 12th Annual Erdheim-Chester Disease Patient & Family Gathering will be held in Glasgow, Scotland, on August 27 a ...

Hydration matters, especially with ECD. Keep water handy, snack on watermelon & cucumber, and build small habits that su...
07/15/2026

Hydration matters, especially with ECD. Keep water handy, snack on watermelon & cucumber, and build small habits that support your well-being.

Living with Erdheim-Chester Disease (ECD) often means paying close attention to your health. Between appointments, treatments, and the many demands of daily ...

You went above and beyond and because of you, hope goes further. Thank you for your generosity, dedication, and unwaveri...
07/01/2026

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.

Our hearts are full. Because of your incredible generosity, enthusiasm, and support, the ECDGA Virtual Fun Run, Walk, or Roll raised an amazing $23,626.00! ...

Address

Deridder, LA

Opening Hours

Monday 9am - 5pm
Tuesday 8am - 5pm
Wednesday 9am - 5pm
Thursday 8am - 5pm
Friday 9am - 5pm

Website

Alerts

Be the first to know and let us send you an email when Erdheim-Chester Disease Global Alliance posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Business

Send a message to Erdheim-Chester Disease Global Alliance:

Shortcuts

Share

Category