, welcome, we're glad you're here. You're not alone. There is always someone here to talk to, or in our Facebook group - https://www.facebook.com/RareDiseaseHU/.
Being a care partner is such a hard path. Please know we're here to listen, to share support and resources. I wanted to share a couple of articles that might be helpful, and might also help you connect with our caregiver patient leaders:
https://raredisease.net/caregiving
https://raredisease.net/caregiver/isolation
https://raredisease.net/caregiver/self-care
I hope those are helpful. Please don't hesitate to reach out, Michael, when we can help with resources, or you just need someone to listen. - Warmly, Donna (Team Member)