MiaThrives

03/08/2024

Happy International Women's Day to all the amazing women who help lift us up and bring joy to our lives every day!

Today we would love to give some extra love to our amazing community member Cindy 🤍

Cindy, is an integral part of the MiaThrives community. Did you know she is an amazing graphic designer and helps to keep our website looking fresh & fun!!

Thank you for all you do Cindy. Cheers to celebrating you 💕

03/06/2024

Did you know MiaThrives has a podcast? 🎙

Join Melissa and Emily from MiaThrives as they discuss thriving with EB, Butterfly Children, our amazing community and everything in between!

We are so excited to connect with you 🥰

Want to be on an episode of the podcast in the future? Send us a message 📧

03/03/2024

“With just having rare disease day, I thought I would share a bit more about my EB. Two things you might not know about me is that me EB affects my scalp and I am constantly trying not to itch listers and scabs.

My EB also affects my mouth, causing blisters and wounds. I can’t bite into hard food like apples. This is why you’ll often see me cutting my food into small bites, like burgers and pizza. I get a lot of funny looks!

This is your reminder not to judge people, because you never know what they are going through.” - Emily, MiaThrives Creative Director 💛 🦋

02/29/2024

🌟✨ Embracing the magic of togetherness! Join us this Rare Disease Day as we dive into a heartwarming craft that not only brings smiles but also raises awareness for Epidermolysis Bullosa. 🎨💙 Let's spread joy and connect the EB community one painted rock at a time! 🌈 Visit MiaThrives.org for craft details & Sophia’s EB Hope. Together, we shine brighter! ✨

02/28/2024

How can you help raise awareness for rare disease day?

1. Education & Sharing Information 🦋 One of the easiest ways to spread awareness is by sharing facts, stories and resources. You can do this on social media platforms and in person. So click that arrow and share away!!

2. Events 💕 You can host and/or participate in events such as walks to raise awareness, fundraisers and educational seminars. Follow your local social media accounts to stay up to date!

3. Use Your Voice 💙 Advocate for policies and initiatives that support research, access to treatment and healthcare resources for individuals affected by rare diseases.

02/27/2024

02/16/2024

If you missed last week’s live webinar with Chiesi Global Rare Diseases, the recording is now available to watch at https://pulse.ly/f6wdisv818

📺 Hear from Professor Joyce Teng of Stanford University and Giacomo Chiesi, Head of Chiesi Global Rare Diseases, about the recently U.S.-FDA approved FILSUVEZ® (birch triterpenes) for Junctional and Dystrophic Epidermolysis Bullosa.

(📸: Daisy, living with Junctional EB, with her loving family.)

02/13/2024

💕 We want to hear from you!

At MiaThrives, we're committed to supporting our incredible EB community. As we step into 2024, we're eager to tailor our events and resources to your needs. Your input matters!

What kind of events and resources do you hope to see from us this year?

Share your thoughts, and let's make 2024 a year of thriving together! 🦋

02/13/2024

02/02/2024