Teaching Rare Disease Patients to Navigate a Complex Medical System

Is Your Doctor Right For You?

Rare diseases are especially hard to diagnose and treat. 

The truth is that most doctors will not admit they don't know about your rare disease or how to help you.

Maybe you feel stuck and are thinking that's just the way it is but we all know that's a dangerous spot to be in. 

You have to be the educated patient.

You need to figure out the cues that they are the wrong doctor, to stand up for yourself and move on, and to acknowledge"actually you are not the right doctor for me, I need to find someone who is."

Download our Free Checklist

This checklist is your guide to figuring out if a doctor is right for you.

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.