DEBRA Australia

02/06/2026

🧬 PeDRA's 2026 EB Educational Series kicks off today with a webinar revealing the latest research insights into Epidermolysis Bullosa treatments for young people.

Details in the post below.

We'll be sure to share any important research updates from the PeDRA series in the coming months.

⏰ Reminder: RSVP by Friday to Be Part of the Live Studio Audience!

Join Dr. Peter Marinkovich for an overview of the evolving research landscape in Epidermolysis Bullosa (EB). He’ll share global insights and answer your EB research questions live.

📅 June 2, 2026
⏰ 5:30 PM PT / 8:30 PM ET

🙋‍♂️🙋‍♀️ Want to be part of the studio audience? Space is limited to 50 attendees. RSVP by this Friday, May 29.

✨ Learn more and reserve your spot: https://pedraresearch.org/event/pedra-webinar-exploring-the-future-of-eb-research/

Special thanks to BioMendics, LLC Castle Creek Biosciences, Inc., Chiesi Group, and Krystal Biotech, Inc. for their support of the 2026 EB Educational Series. PeDRA is solely responsible for all program content and the selection of all presenters, authors, moderators, and faculty.

29/05/2026

DEBRA Australia will be running new quarterly online support sessions for EB mums, dads and primary caregivers, as part of DEBRA's Family Support Initiative.

Next session: Thursday 4 June 7.30pm

For more information see: https://www.debra.org.au/family-support/online-support-sessions/

28/05/2026

DEBRA Australia is pleased to call for Research and Education Travel Fellowship applications for the 2026/27 financial year.

These grants are intended to foster professional development for early career scientists or health professionals to improve the health and well-being of children and adults living with Epidermolysis Bullosa (EB). The fellowship funds are offered for travel in 2026/27 and can be used for any conference related to EB.

Applications for travel are to be submitted by the following closing dates:
July to December 2026 travel: Application closing date – 5pm (EST), 22 June 2026.
January to June 2027 travel: Application closing date – 5pm (EDST), 24 November 2026.

Find out more and apply at: https://www.debra.org.au/research/travel-fellowships/

25/05/2026

NEBDS UPDATE | To all our EB community, we have a brief update regarding a product available on the National EB Dressing Scheme.

There have been changes to the following products:

Rebranded:
LEUKOMED LA STERILE 5CM X 5CM
LEUKOMED LA STERILE 10CM X 10CM
LEUKOMED LA STERILE 10CM X 20CM
LEUKOMED LA STERILE 53CM X 60CM
LEUKOMED LA STERILE 53CM X 120CM
LEUKOMED LA STERILE 53CM X 180CM

Discontinued:
Tegaderm Foam Non-Adhesive dressing 10x20cm
SPYCRA PROTECT SILICONE PROTECTIVE DRESSING 18cmx30cm STERILE
SPYCRA PROTECT SILICONE PROTECTIVE DRESSING 10x18cm STERILE
SPYCRA PROTECT SILICONE PROTECTIVE DRESSING 7.5x10cm STERILE
SPYCRA PROTECT SILICONE PROTECTIVE DRESSING 5x7.5cm STERILE
Sterile SPYCRA is no longer available however a non-sterile dressing is available for use.

A list of other approved products and dressings are available on the NEBDS website: https://www.ebdressings.com.au/approved-dressings/ or search 'NEBDS Australia'

If you have any concerns please contact Independence Australia, or our National Family Support Coordinator to discuss alternative options. 🩵

25/05/2026

Montmorency RSL was a full house on Sunday with Brighter Days supporters flocking from far and wide for the cheque presentation. DEBRA Australia were lucky to receive $175K with generous sponsors locking in for another successful year in 2027. The funds raised by the incredible Brighter Days committee, volunteers and supporters will support DEBRA's vital programs supporting the EB community. Thank you for your support! 🦋💙🦋💙

20/05/2026

Carmel Harris lived her life to the full, every day, and she wanted to see other people living with EB reaching for their dreams.

The ‘Follow Your Dreams’ grant, initiated by Carmel, is a gateway to your dreams. Ruby's dream was to see giraffes! https://www.debra.org.au/follow-your-dreams/

Whatever your dream, DEBRA Australia would like to help you get there. Apply by 31 May!

17/05/2026

This National Volunteer Week we’re celebrating the incredible people who give their time, energy and heart to support the EB community 💙To our volunteers across DEBRA Australia: thank you! Whether you’re helping at events, supporting families, sharing your expertise or raising awareness, your impact is felt every single day.

Because of you, families living with EB feel more connected, supported and understood. You help make DEBRA's programs possible, strengthen our community, and bring hope where it’s needed most.

We simply couldn’t do this without you.

From all of us at DEBRA Australia thank you for everything you do.

14/05/2026

The DEBRA Australia team will be exhibiting at the The ACD - The Australasian College of Dermatologists 58th Annual Scientific Meeting this week from 16-18 May, we're looking forward to attending presentations from DEBRA Australia stakeholders and peers including Prof Dedee Murrell, Prof Johannes Kern, A/Prof Susan Robertson, A/Prof Vanessa Morgan and others. https://acdasm.com.au/

13/05/2026

😂 Melbourne, are you ready for a huge June long weekend laugh?

Join us for Long Weekend Laughs in support of DEBRA Australia — featuring newly announced guests Wil Anderson, Kirsty Webeck and Doug Chappel!

A massive thank you to , and all the incredible performers donating their time to support the EB community.

🎟️ Tickets are just $45
🎁 Amazing raffle prizes to be won
📍 One day only in 2026 — don’t miss out!

Get your tickets:

Get ready to giggle, Long Weekend Laughs is back and bigger than ever! Following the success of Long Weekend Laughs and Comedy Trivia Night, a medley of Australia’s funniest stand-up comedians are again coming together in Melbourne this June long weekend to help raise funds to support

12/05/2026

Today, on International Nurses Day, we celebrate the incredible nurses who make a profound difference in the lives of people living with epidermolysis bullosa (EB).

At DEBRA Australia, we are especially grateful for the dedication, skill and compassion of EB nurses across the country. Their expertise not only supports complex wound care and pain management, but also provides comfort, advocacy and hope to individuals and families navigating life with EB. From hospitals to homes, these nurses go above and beyond every single day—building trusted relationships, empowering patients, and improving quality of life in ways that truly matter.

To all nurses, and especially those caring for the EB community: thank you. Your impact is immeasurable 💙