Rare Care Connect
A safe community for rare disease patients to Connect, Grow, and Learn together ❤️
Join now!Living with rare diseases can be so isolating...
As much as our family and friends want to, 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 spend desperately researching on your computer looking for any answers or things that might help because nobody knew how to help you.
They haven't experienced that odd combination of anxiety and anticipation for an appointment with the new doctor you've been waiting to meet for 8 months. Will that doctor hold the answer you've been hoping for or will they dismiss or even humiliate you?
And your family tries to understand but they just can'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.
Imagine...
- What you can do with knowledge, support, and help from someone who knows the system and how to navigate it.
- 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. ❤️
Introducing...Rare Care Connect Community
Rare Care Connect includes:
❤️ The Best Community - You will be a part of a group of rare disease patients who are there for each other, who will keep you going when you're stressed, frustrated, or hopeless, and who will celebrate your successes with you too.
❤️ Strategies and Skills - I will show up each month with a workshop and brainstorming call to help you gain the skills and confidence to navigate the system. You will have time to share your experiences and ask questions. You will also have access to the existing, growing library of 5 full courses and 10 recorded workshops.
❤️ Support - You will have the support to start using the strategies and skills to advocate for the care that is right for you!
About Me
Hi, I'm Patti DeMuri
As a rare disease patient, advocate/educator, and retired medical mom of 3 adult kids, it is my passion to empower patients with rare diseases, like you, in navigating the medical system and working with your doctor to get the right care for you.
My qualifications include:
- advocating for my kiddos with rare diseases for 10+ years,
- a Patient Navigator Care Coordination Certificate,
- EDS ECHO Community Leaders & Educators program graduate,
- ACPI Parenting, and Family Coach Certification,
- 20+ years in biotech as a project manager, and
- a 25 year marriage to a pediatrician.
I am here to help you navigate the confusing and often frustrating medical world and your rare disease care.
Rare Care Connect Helps you Become Your Own Advocate
You are the expert on you! You know your body, your symptoms, your goals, and what you need.
But the medical system is broken...it is hard to navigate and even harder to get the right care.
Your care needs to be right for you...you will learn how to advocate in all four rare care areas so you can get the care that you need.
Rare Care Connect Includes:
Workshops
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.
Isn't it time to get the care you need and improve your quality of life?
FAQs - Your most popular questions answered...
If you don't see your question here, please reach out and ask away, email [email protected].