Workshops & Courses
Rare Care Connect Community
Life as a rare disease patient or caregiver can feel hopeless and lonely but our Rare Care Community can help. In our community, you will...
- Grow and gain the confidence to be your own advocate
- Connect with others going through the same thing
- Learn how to better navigate the medical system
so you can get the care you need to live your best life.
Workshops & Courses
Navigating the medical system is challenging and full of pitfalls.
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.
One on One Coaching
Are you overwhelmed, frustrated, or stuck? Getting rare care in our broken medical system can be next to impossible.
Coaching with Patti saves you time, energy, and heartache by helping you create your own individualized plan to navigate the medical system so you get the care you need.
Hi, I'm Patti DeMuri
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.
