Mi corazón con LEAH

09/02/2026

Wound care supplies for Epidermolysis Bullosa (EB) can cost more than $80K per month and sadly, many insurance companies fall short. This leaves families struggling to get critical, basic care.

That’s where debra of America’s Wound Care Distribution Program steps in. We provide supplies at zero cost to hundreds of individuals and families nationwide. If you need support, debra is here for you. 🧡

Learn more at https://pulse.ly/bjszvhvobf

08/02/2026

Los invito a que este 9 de febrero en Netflix miren este hermoso documental sobre esta horrible enfermedad Epidermolisis Bullosa 🙏🏼🤞🏻❤️

A global story of urgency, love, and science, now ready for the world.

Matter of Time is available to Netflix members everywhere on February 9.

02/01/2026

Feliz año 2026 🙌🏻

17/12/2025

🚨 Advocacy Alert for the EB Community: Your Voice Is Needed TODAY!

Kids living with Epidermolysis Bullosa (EB) and other rare pediatric diseases face a major barrier to new treatments. The Rare Pediatric Disease Priority Review Voucher (PRV) Program, which incentivizes companies to develop therapies for very rare conditions expired in Dec 2024. Without it, promising treatments may never reach our community.

Earlier this month, the U.S. House unanimously passed the Mikaela Naylon Give Kids a Chance Act, which includes the PRV Program. Now it’s headed to the Senate, where every Senator’s vote counts.

‼️ Let's get it across the finish line: Email your U.S. Senators through debra’s secure system. It’s quick, easy, and ensures your voice is heard👉https://salsalabs.pulse.ly/orftxn4kdn

17/12/2025

2025 was a turning point for EB care.

🦋 ZEVASKYN
Approved in April 2025 as the first-ever autologous gene-modified cell sheet therapy for wounds in people living with recessive dystrophic epidermolysis bullosa (RDEB).

This breakthrough traces back to an early, bold investment by EB Research Partnership, which helped fund the groundbreaking research at Stanford University through our Venture Philanthropy model.

🦋 VYJUVEK
That momentum continued in 2025, as VYJUVEK received EU approval and expanded FDA labeling, opening treatment access for all dystrophic EB patients from birth and enabling at-home application by patients or caregivers.

This is what progress looks like: real treatments, real access, real impact. And it’s only possible because of a community that refuses to wait, and we are so grateful.

💙 ZEVASKYN and VYJUVEK happened because of your support. Give before December 31 to receive your tax benefit at https://bit.ly/4p6vXoV

100% of your donation goes straight to EB research for more treatments and ultimately a cure

02/12/2025

28/10/2025

Hoy se cumple un año que nuestra pequeña Leah cambió sus alas de mariposa por hermosas alas de ángel… te amamos y extrañamos mucho mi pequeña guerrera ❤️🪽