Finding relevant and reliable mental health resources can be challenging and may leave you feeling frustrated, overwhelmed and even potentially more stressed than you were before. But the truth is, mental and emotional health is just as important as physical health when it comes to the overall well-being of people and caregivers affected by a rare disease.
Although mental health is becoming a greater part of the conversation among patients, caregivers and healthcare providers, it’s crucial to continue to elevate the importance, reduce the stigma and connect the community to a wide array of resources, support groups and organizations.
Below are five resources designed to help the community navigate their unique needs.
Center for Chronic Illness provides support groups and educational events for those living with chronic health challenges and offer online support groups focused on similar shared experiences.
Our Odyssey connects young adults impacted by rare and chronic conditions with social and emotional support in the hope of improving their quality of life.
Compassionate Friends provides friendship, understanding and hope to those going through the natural grieving process.
Give An Hour creates resilient communities by improving mental health and emotional well-being, one hour at a time, while focusing on the rare caregiver perspective.
Angel AID provides mental health and wellness services to rare families through sustainable psychosocial training, transformative retreats and a connective caregiver-to-caregiver multilingual network.