Teaching Rare Disease Patients to Navigate a Complex Medical System

Struggling to find the right doctor to help you with your rare disease?

Learn how to find the right doctors and how to avoid the wrong doctors.

Imagine finding a doctor who is not only interested in your rare disease but also willing to work WITH YOU.   So that you might have a doctor...

  • who listens to you
  • who believes you
  • who welcomes your thoughts, input, and rare disease information. 

A true partner who is focused on your goals, your priorities, and what you are looking for in terms of your health and healthcare. 

What a difference working with the Right Doctor could make in your life! 

How to Find The Right Doctor for You 

Join our FREE 3-Part Workshop Series starting on July 12th.

A good doctor may know about your rare disease...the Right Doctor will listen to you and work with you.

I understand. I get it. I know what it's like to have had a terrible time with doctors...

Feeling like they don't believe you, not listening to you, not knowing how to diagnose or even treat your rare disease.  

Perhaps you've had doctors who were unkind, dismissive, and uncaring.  
Delays in diagnosis,  being told there is nothing wrong, that there is no hope and you just need to learn to live with it.  

I truly understand because I've been there.  That's why I've put together this workshop - to help you find doctors who are right for you!


Maybe you are ready to give up, put up with the doctor you have, or take your chances on your own 

If only there was a way to finally find a doctor who was a good fit for you...

This workshop does just that!

You will discover:
  • How to identify and clarify what you need in a doctor.
  • A process to find doctors most likely to fit your needs.
  • A simple technique to use at your 1st visit to help you decide if this is the Right Doctor.
  • Bonus discovery:   How to identify and avoid the wrong doctors who cause so many issues and heartaches. 

Finding the right doctor really does go a long way for improving your care and quality of life!


When you find the right doctor for you, they will listen to you, they will believe you, and they will work with you on getting the right care for you to lead your best life!

 What others are saying...

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.