Facilitated by patients and caregivers, weekly sharing sessions between patients / caregivers with chronic kidney disease, to support, inform, fight isolation (mainly because of immunosuppression) and identify needs that will feed our recommendations & futurs supporting projects. In digital form, to combat territorial inequalities. Participants choose their own themes (emotional and sexual life, rights, medical care, employment, nutrition, etc.).
Chronic kidney disease, soon the 5th leading cause of death worldwide, affects around 6 million people of all ages in France. 100,000 people survive only thanks to dialysis or kidney transplants. The disease is impoverishing and isolating (immunocompromised patients, regular dialysis, loss of employment, etc.), and has many day-to-day effects (medical follow-up, nutrition, etc.). For instance, some children don't want to go to school for fear of contaminating a sick parent back home!
Our weekly patient/carer get-togethers aim to inform and support between peers, combat isolation & identify needs (to feed futur projects & advocacy). > Confidential patient & caregiver exchanges + special visios featuring an expert (available for replay). > A wealth of topics identified by the participants themselves: caregivers role, dialysis, transplants, labor law, pregnancy/maternity, nutrition, etc. > A number of participants designed to encourage participation & diversity.
- Free the expression of doubts and fears, in a caring and understanding environment; - Break down isolation, forge links around experiences; - Provide up-to-date information to patients/caregivers; - Combat territorial and social inequalities... - Identify participants' concrete needs and expectations for futur visos and projects and for our advocay; - Provide support for specific situations identified (on request). - Engage (facilitators are patients/cargivers)
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