Healing Hugs Haven
Teaching you how
to navigate the medical system,
create a collaborative medical team, and
become a powerful self-patient advocate so
you get the care you need
to live your best life with rare disease!
Do you or your loved one have a rare disease or
a complex health condition?
Navigating the Medical System
Our broken medical system is not set up to serve those of us with rare and complex health issues. Without understanding the ins and out of the medical system, it can be difficult or impossible to get the care you need. We'll help you navigate, this complicated system, so you don't have to do it alone!
Collaborative Medical Team
The key to getting appropriate care for rare and complex health issues to have a team that communicates and works together. We'll teach you how to create and nurture your medical dream team!
Effective Patient Advocacy
What do you do when things go wrong, while dealing with our medical system? Knowing what to say, who to talk to and how to get changes made can be the difference between great care vs bad care. We'll teach you how to safely and effectively advocate for you or your loved one!
Hi, I'm Patti DeMuri
Rare Disease Coach, Retired Medical Mom, Rare Disease Patient Advocate, TMS Co-Chair for Support Group Leaders, PNTC Care Coordination Certificate, ACPI Parenting and Family Coach
I am the owner and founder of Healing Hugs Haven. My passion is helping rare disease patients navigate the medical system and work with their doctors so that they get the care they need to lead their best life.
3 Proven Appointment Strategies
Get our '3 Proven Strategies to Get the Care you Need' guide to improve your doctor appointments and help your doctor help you get the care you need to live your best life with rare disease!!