ECDGA Community,
This week marks the beginning of Maand van de bewustwording rond ECD, and we’re starting with one of the most important steps we can take together: helping more people understand Erdheim-Chester Disease.
You can’t recognize what you’ve never heard of.
For many people living with ECD, the journey to diagnose begins long before they ever hear the words De ziekte van Erdheim-Chester. Symptomen can affect different parts of the body, experiences vary from person to person, and the rarity of ECD can make finding answers challenging.
Throughout this first week, we’ll focus on building a foundation of understanding. We’ll explore:
- Wat is ECD?
- What signs and symptomen can occur?
- Why can the diagnostic journey be so difficult?
- How rare is ECD?
- What are some common myths about the disease?
- And our mascot, Ziggy, will help us make complicated information a little easier to understand and share.
Of je nu patiënt, verzorger, familielid, arts of onderzoeker bent, vrijwilliger, donor, or friend of the ECD community, you have a role in raising awareness.
This week, we ask you to do something simple: follow along, learn something new, and share our posts with others. Iedereen die leert over ECD is one more person who can help make this rare disease more visible.
Together, we can turn knowledge into recognition, recognition into connection, and connection into hope.
Kennis vandaag. Hoop voor morgen.
Met dank,
Wereldwijde Alliantie tegen de ziekte van Erdheim-Chester