Asociación Cuenta con Nosotros. Síndrome de Ehlers Danlos (ACCNSED)

About the association

Asociación Cuenta con Nosotros. Síndrome de Ehlers Danlos (ACCNSED) is a Barcelona nonprofit that works to raise awareness of Ehlers-Danlos syndrome (EDS), a group of genetic connective tissue disorders involving collagen that can appear in different types and degrees of severity. The association was registered in Spain's First Section of the Register of Associations under No. 53098. It filed its application with the Catalan government's Department of Justice and received a Spanish tax identification number from the national government in February 2014.

Activities and current status

The association says it had to stop its active work because of serious health problems affecting the person who started the project. It continues to share information about EDS through its blog, including information on different types of the syndrome, personal accounts, articles, and sources. The blog also documents its activities, including a petition delivered in 2014 for Rare Disease Day on February 28.

Associated book

The association promotes Cuesta. Nací con Síndrome de Ehlers Danlos (“It's Hard. I Was Born with Ehlers-Danlos Syndrome”), an autobiography by Berta Martínez Boronat published by Editorial Círculo Rojo. The book is available through online retailers and bookstores affiliated with the publisher. The author set a maximum price of €15 in Spain, plus shipping, and says it may not be given away for free or resold at excessive prices.

Contact

• Phone (WhatsApp only; calls are not accepted): 628 32 10 15
• For questions about the book or association, use the contact form on the blog.