Rare Care Connect 

A safe community for rare disease patients to  Connect, Grow and Learn together ❤️ 



If you'd like me to send you an email when the doors are open again... sign up below.

You will also receive weekly emails about navigating the medical system so you can get the care you need. You may unsubsribe at any time.

Living with rare diseases can be so isolating...

As much as our family and friends want to understand, some things are hard to understand until you actually experience them which can make you feel even more alone.

They have no idea how many sleepless nights you spent desperately researching on your computer looking for any answers or things that might help because nobody knew how to help you.  

They haven't felt the odd combination of anxiety and anticipation for an appointment with the new doctor you've been waiting to meet for 8 months. Will this doctor provide an answer or will they dismiss or humiliate you?

Even when they try to understand they don't because they are living such a different life.

You no longer have to be alone and isolated in a world that doesn't understand.  


Knowing that others are going through the same thing...dealing with similar issues...having the same struggles

A safe community where you will find validation, understanding, and a sense of belonging

A safe place where we can come together to help one another, share our stories, and learn from each other.💗

You don't have to do it alone any longer!

Introducing Rare Care Connect Community 

A community that is here to keep you going when you're stressed, frustrated, or hopeless that celebrates your successes too. 

Where you can connect, learn and grow into your own advocate so you can get the care you need and deserve! 

The Rare Care Connect Community includes:

💗 Community - Everybody's there for each other. 
💗 StrategiesI will show up each month with workshops and coaching calls to check in with you.
💗 Support I will work with you on gaining the skills and confidence to advocate for the care that 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 empowering patients with rare and complex diseases to navigate the medical system and work with the right doctors so that they get the care they need to lead their best life.

Rare Care Connect helps you become Your Own Advocate based on the 4 Cs:

Clarifying, Connecting, Communicating, and Collaborating.

 You are the expert on you!  You know your body, your symptoms, your goals, and your preferences.

But the medical system is one size fits all.

Your care needs to be the right care for you...so you will learn how to advocate for that care. 

As a community, our next focus will be on Medical Trauma including:

  • learning how to recognize, deal with and avoid future medical trauma 
  • a chance to connect with others and discuss this topic 
  • a special guest who will share a Tapping method that can help us deal with our medical trauma.

Rare Care Connect Includes: 


Gain the strategies, skills, and confidence to connect and collaborate with the right doctors so you can get the care you need through live and pre-recorded workshops.  Listen at your convenience with video recordings, audio-only recordings, and transcripts.

Coaching & Support

Get continued support and guidance on your next steps to keep moving forward and making progress in your care through coaching calls. Listen at your convenience with video recordings, audio-only recordings, and transcripts.

Rare Disease Community

No longer alone, you will be in a safe community of people with rare and complex diseases who understand and support you, your challenges, and your journey.

Private Facebook Group 

Connect and share resources with the community. Get the timely help and the support you need to keep moving forward in our private Facebook group. 

FAQs - Your most popular questions answered...

If you don't see your question here, please reach out and ask away, email [email protected].