Detrás de gran parte de lo que ocurre en la comunidad de ECD hay personas que, sencillamente, decidieron echar una mano. Los voluntarios aportan su tiempo, sus habilidades, su experiencia y su energía para apoyar a los pacientes, sensibilizar a la sociedad y fortalecer la comunidad de ECD. Cada mano que echa una ayuda cuenta...
No hay dos experiencias con la ECD que sean exactamente iguales. Cada paciente y cada cuidador tiene su propia historia. Cuando se comparten esas experiencias, pueden servir para informar a otros, crear vínculos y ayudar a alguien a sentirse menos solo. Tu historia importa. Pásate a la acción: Comparte algo sobre...
Sometimes the most important thing you can hear is, “I can help.” The ECD Patient Navigator helps patients and families find information, understand available resources, connect with the ECD community, and identify appropriate next steps. You don’t have to...
An ECD diagnosis can feel overwhelming, especially when the disease is something most people have never heard of. But no one has to navigate ECD alone. Around the world, patients and families are connected by a community that understands, listens, shares, and supports...
As we close another week of ECD Awareness Month, we celebrate everyone who makes progress possible. Thank you to the physicians searching for answers, the researchers making discoveries, the patients and families who participate in research, and every supporter who...
