Teaching Rare Disease Patients to Navigate the Complex Medical System

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!

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Blog posts about the joys and challenges of living with rare diseases and complex health issues.


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Get our guide to feel in control of your appointments and create a true partnership with your doctor in your fight against rare disease

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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!

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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!

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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.

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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!!

Yes Please!