#EBcare

Debra - The Butterfly Skin Charity

@debraireland.bsky.social

8 months ago

If you or a loved one lives with #epidermolysisbullosa in Ireland, joining the #EBRegistry is a powerful way to support #EBresearch and advance #EBcare.

Learn more👉 www.debra.ie/eb-research/...

#HealthReserchMatters #EB #Registries

Debra - The Butterfly Skin Charity

@debraireland.bsky.social

9 months ago

We're proud to support not just #EBresearch but also Clinical Practice Guidelines (CPGs) to improve #EBcare.

The latest CPG focuses on managing oesophageal strictures in inherited #EB and is now available to help clinicians worldwide improve care.

👉 www.debra.ie/news/new-cli...

Rare Disease Clinical Trial Network

@rarediseasectn.bsky.social

10 months ago

We're so glad you shared this brilliant work at the #RareResearch25 Conference! A great example of progress and hope for #EBcare and #EBresearch in #RareSkin disease. Thank you for joining us and for everything you contribute to advancing rare disease research!

Debra - The Butterfly Skin Charity

@debraireland.bsky.social

10 months ago

Debra's Head of Research @sineadhickey.bsky.social and Registry Coordinator Ms Lara Cutlar from NISR solutions at the
@rarediseasectn.bsky.social Conference. They presented on the #EBregistry. A resource for driving progress in #EBcare and #EBresearch.

@hrbireland.bsky.social @hrci.bsky.social