Dear ECDGA Community,
Rare should never mean invisible.
This is week 2 of ECD Awareness Month, and we are asking our entire global community to help more people see, understand, and recognize Erdheim-Chester Disease.
Together we make rare visible.
Every day this week, we will shine a light on a different part of the ECD journey:
Monday: What is ECD?
Tuesday: Recognizing Symptoms
Wednesday: Finding Expert Care
Thursday: Patient and Caregiver Stories
Friday: Research Brings Hope
Saturday: Global ECD Community
Sunday: How Everyone Can Help
Behind every one of these topics are real people. People who searched for answers. Families who needed support. Physicians working to understand a rare disease. Researchers searching for better treatments. And a worldwide community determined to make a difference.
This week, we need your help.
You do not need to be an ECD expert to raise awareness. You simply need to help someone else learn that ECD exists.
Take the ECD Awareness Challenge:
- LEARN
Follow along each day and learn one new thing about ECD. - SHARE
Share at least one ECDGA Awareness post with your social network, family, friends, or colleagues. - TELL SOMEONE
Tell one person about Erdheim-Chester Disease who has never heard of it before. - INVITE SOMEONE IN
Encourage someone to follow ECDGA and learn more about the patients, families, physicians, researchers, and volunteers who make up this global community.
One post. One conversation. One new person who knows the name Erdheim-Chester Disease.
That is how awareness grows.
And when thousands of us do it together, a rare disease becomes harder to overlook.
Whether you are a patient, caregiver, family member, physician, researcher, volunteer, donor, or friend of ECDGA, you can help make rare visible.
This week, don’t just follow Awareness Month.
Be part of it.
Together We Make Rare Visible.
Knowledge Today. Hope for Tomorrow.
With gratitude,
Erdheim-Chester Disease Global Alliance