Au cours du Mois de la sensibilisation à la maladie de Charcot, nous avons abordé les thèmes de la recherche, des soins prodigués par des experts, des patients, des aidants, des familles, des bénévoles, de la défense des droits et des personnes qui œuvrent chaque jour pour faire avancer les choses. Mais cette sensibilisation ne doit pas s’arrêter à la fin du mois. Chaque personne qui apprend….
Caregivers give an extraordinary amount of themselves. They attend appointments, coordinate care, ask questions, provide encouragement, and help navigate difficult days. Their own needs can sometimes get overlooked. Supporting patients means supporting caregivers too....
ECD affects more than the person who receives the diagnosis. Families become appointment companions, researchers, organizers, advocates, listeners, and sources of strength while navigating their own questions and uncertainty. Sometimes family includes friends,...
Behind so much of what happens in the ECD community are people who simply decided to help. Volunteers contribute their time, talents, experience, and energy to support patients, increase awareness, and strengthen the ECD community. Every helping hand makes a...
No two experiences with ECD are exactly the same. Every patient and caregiver has a story. When those experiences are shared, they can educate others, create connections, and help someone else feel less alone. Your story matters. Take Action: Share something about...
