Be seen, heard, and understood by your doctors

so you can get the care you need to live your best life!

Hi, I'm Patti. I empower rare and complex disease patients by teaching you how to navigate the medical system and partner with your doctors so you can get the right care.

Our broken medical system is not set up to serve rare and complex patients. It feels overwhelming and impossible to get doctors to listen and help.  

Life with rare and complex issues is hard enough without fighting the medical system.  But, it doesn't have to be this way. 

With my guidance and roadmaps to navigating the medical system, you can feel like you are regaining control and taking the lead in your healthcare so you get the right care for you. 

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How to Get the Care You Need

Navigating the Medical System

Our broken medical system is not set up to serve rare and complex patients. Without understanding the ins and out of the medical system, it can be difficult or impossible to get the care you need.  I'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 is to have a team that communicates and works together.  I'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.  I'll teach you how to safely and effectively advocate for you or your loved one!

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Ways to work with me...

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Rare Care Connect  Membership

Join our rare and complex patient community that guides you in advocating and navigating the medical system.

Learn More
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Workshops & Courses

Our workshops and courses take rare disease patients from frustrated, overwhelmed, and stuck to calm, confident, and effectively navigating the system to get the care they need.

Coming Soon
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Work One on One with Patti

Need guidance and a plan to improve your healthcare? Work directly with Patti to jumpstart your progress to better care.

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More About Me

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Founder of Healing Hugs Haven, Patient Educator/Mentor, Retired Medical Mom, Rare Disease Patient Advocate, PNTC Care Coordination Certificate, ACPI Parenting and Family Coach

I'm passionate about helping rare, complex, and chronic disease patients gain the skills and confidence to navigate the medical system and work with their doctors to get the care they need. 

I help patients learn how to advocate for themselves through teaching, mentoring, and coaching in classes and our ongoing membership.   

I'm the mom of three adult children, two of whom were diagnosed with EoE and multiple other rare, complex, and chronic diseases since 2007.  With 20+ years in the biotech field (molecular biology/genome analysis software/project manager) and a past 25 year marriage to a pediatrician, I have a wealth of knowledge and experience to help you.

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Blog Posts

Do you have joy and meaning in your life?

Three Reasons You Need To Be Your Own Advocate

Your Rare Destination

Free Training

How to Improve Your QOL

You don't have to wait for your health to get better
to improve your quality of life 
💗💗💗
Yes Please!
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