JUST ADDED: Matter of Time is coming to Chicago 🎬 Join EB families, researchers & supporters for a night of film, conversation & unstoppable hope, fueling the race to cure Epidermolysis Bullosa (EB). 🎟 Get tickets + sponsorships → https://t.co/J0WByYmgDh

We did it—$57,302.80 raised for EB research! 💙 From butterfly art to bold stories, your creativity helped accelerate life-changing science for Epidermolysis Bullosa. 🦋 When we fly together, we’re unstoppable. #UnstoppableMigration #EBAwarenessWeek

Join Esteta Skincare and @EBResearch in honoring Elisa’s legacy 💗 Shop with purpose, each purchase helps fund research and accelerate treatments for Epidermolysis Bullosa. 👉 https://t.co/MID6kinliG 👉 Learn more: https://t.co/KOAqXD8LBx

Matter of Time is coming to FRANCE! 🇫🇷 Experience the film uniting music, community, and hope in a global movement to change the future of rare disease. 💙 🎟️ Tickets on sale now at https://t.co/LFJ2ayhCFS

Katelyn is unstoppable with her family, her fiancé, and the doctors fighting beside her. This #EBAwarenessWeek, we’re flying together toward a future where every person with EB has the treatments they deserve. 💙 Join the Unstoppable Migration → https://t.co/NvsCgDZrCK? 🦋

Tomorrow! 🦋 Join our October Town Hall as we celebrate EB Awareness Week (Oct 25–31) with the official kickoff of the 2026 Plunge for Elodie, the hometown fundraiser turned global movement to cure EB. Hear from the leaders behind this global wave of hope, including Elodie’s mom

Every migration begins with its first miles. For EB families, those first steps, toward care, community, and courage, can feel uncertain… …Yet unstoppable. Archer’s story reminds us that every first mile matters. This EB Awareness Week, we’re rallying together to raise

It began in silence, then came the courage to fly. Like monarchs starting their journey, Rowan and families living with EB move forward with fragile strength and unstoppable hope. This EB Awareness Week, we’re rallying together to raise $50,000 for research that brings us

For the past few weeks, Terry Stephens has been virtually climbing the 7 Summits, the tallest mountains on each continent, on the Versaclimber at EFM Health Club Glenelg. Today, he’ll take on his final challenge: climbing Mt. Everest in one day to raise funds and awareness for

For 20 years, Dr. Peter South has studied EB with one goal: to change outcomes for patients and families living with this rare disease. 🦋 Read Dr. South’s full story and more from our 2024 Impact Report at https://t.co/96sh5fKryO

What a special few days for EBRP on the West Coast! From the red carpet to the newsroom, Eli and Lily Meyer, Ambassador Olivia Vedder, and CEO Michael Hund rallied our community to light up San Diego. Matter of Time took home Best Film at the San Diego International Film

The mission to cure EB is coming to the big screen 🎬 Matter of Time premieres November 7th in Seattle, powered by Eddie Vedder’s 2023 performances and the unstoppable drive of patients, families, and scientists leading a global rare-disease movement. 🎟️ https://t.co/2aPn4XaxRy

During #EBAwarenessWeek (Oct 25–31), join our October Town Hall as we kick off the 2026 Plunge for Elodie, a global movement uniting families, advocates & researchers in the fight to cure EB. Hear from Emily Kubik, Kristan Khtikian, Nathan Burmeister, Stephanie Luciano-Novo &

In Thailand, Dolores shared her journey of living with EB, and Eli’s dream of being accepted with a simple “Hi.” Her words sparked connection, compassion, and a deeper understanding that EB stories matter everywhere they’re heard. Acceptance begins with awareness. Awareness

We’re honored to share that Matter of Time was named Best Music Documentary Feature at the @nashfilmfest last month. Huge thanks to every family, partner, and supporter who helped bring this story to life. The journey’s just beginning… stay tuned, MORE is coming... 🎬💙

Honored. Grateful. Unstoppable. 🦋 A few weeks ago, EB Research Partnership CEO Michael Hund was honored to join global leaders in healthcare, policy, and patient advocacy at the @milkeninstitute Future of Biomedical Research and Innovation convening in Washington, D.C. This

Families who are affected by EB remind us daily what resilience looks like. Our job is to match that strength with science and action. That’s why we created The Effect, a community of people giving what they can, together fueling research that brings us closer to cures. Your

At the Canadian premiere of Matter of Time at @ciffcalgary, EB families were at the center of it all, their strength, their stories, their hope. 🦋 That spirit was beautifully echoed by Kevin Drew and Broken Social Scene. Kevin spoke directly to families about the importance of

If you read one story of strength today, let it be Mackenzie’s. A strong girl with a relentless, loving family. Sharing her story powers awareness for Epidermolysis Bullosa and fuels research so children and families like hers get better treatments, faster. 🎥 Find their

When Jennifer Wood, a Specialist Dental Nurse at Great Ormond Street Hospital, first cared for a child with EB, she was struck not only by the fragility of their skin, but by the strength and resilience their family carried every day. She quickly saw that EB affects every part