EB World Congress

02/04/2020

‘Castle Creek Biosciences has received a $75 million investment to advance its gene therapy program.’

Castle Creek Biosciences has received a $75 million investment to advance its gene therapy program, including FCX-007, a treatment candidate for people with recessive dystrophic epidermolysis bullosa (RDEB) that now in a pivotal clinical trial. “We are proud to have the strategic support of...

25/03/2020

‪“InMed Pharmaceuticals does not expect that the COVID-19 pandemic to significantly affect data collection in its Phase 1 trial testing INM-755, a potential epidermolysis bullosa (EB) treatment, in healthy volunteers.”‬

InMed Pharmaceuticals does not expect that the COVID-19 pandemic to significantly affect data collection in its Phase 1 trial testing INM-755, a potential epidermolysis bullosa (EB) treatment, in healthy volunteers. INM-755 is a topical cream, whose active ingredient is cannabinol (CBN), a...

18/03/2020

“This achievement confirms that Abeona can deliver EB-101 in a study setting that closely parallels its potential real-world application,” says João Siffert, M.D., Chief Executive Officer. 😄🦋

Abeona Therapeutics Announces First Patient Treated in Pivotal Phase III Clinical Trial Evaluating EB-101 Gene Therapy for Recessive Dystrophic Epidermolysis Bullosa Download as PDF March 17, 2020 Majority of potential study participants have been pre-screened EB-101 successfully manufactured at Abe...

11/03/2020

“Children comprise half of the people affected by rare diseases.” 🦋

The number of treatments for children with rare diseases has grown over the past decade, according to a new study. However, despite the increase, nearly 7,000 rare diseases are still lacking treatment. And federal incentives to boost treatment development for these rare diseases have primarily...

08/03/2020

Did you know the first Global Congress on EB was organised by an ALL-FEMALE core team?!
🙌🏼👩🏻👩🏾‍💼🧑🏼‍🦰👩🏽‍💻👩🏻‍🦳👩🏻‍⚕️👩🏾‍🦱👩🏼‍🏫👏🏽

04/03/2020

“Chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier.”

Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier. The offer runs through April 30, and aims to supports work by researchers and clinicians into a better understanding...

29/02/2020

Well done for helping raise EB awareness on !! Is your organisation taking part in Rare Disease Day? Be sure to comment below or tag us in a post!

28/02/2020

‪Did you know tomorrow is Rare Disease Day? Help raise EB awareness by sharing your photos and stories about EB through the link below! 🦋‬

‪https://www.rarediseaseday.org/tell-your-story‬

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27/02/2020

Have you read our latest blog? Click below to discover how one mother’s journey caring for her daughter living with EB inspired her to create an EB organisation in Egypt. 🦋

One mother’s journey in the EB Community The inaugural EB World Congress allowed members of the international EB Community – researchers, clinicians, advocacy groups, and patients – […]

26/02/2020

Did you have a great time at the Congress? Were you unhappy with something at the event? We value your constructive feedback!

Your feedback will be used to help plan future events, so please take this opportunity to share your opinion. Survey closes Saturday, 29 February!

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24/02/2020

“I wish I could tell myself that I would one day be thankful for my appearance, and that because of my appearance, I would have an opportunity to share my story with Vogue. There is unity in the differences we have, and that’s wonderful. I hope that soon others may start to think so as well.”
We are ecstatic for EB advocate, Lucy Beall! Check out her interview and photo shoot with Vogue Italia below. 🥰👏📷

Interview with Lucy Beall

18/02/2020

We are so pleased with the interest we've received regarding future EBWC events! Be the first to hear about our latest news and updates by signing up for our email list (scroll down to register)! 🦋
https://ebworldcongress.org/the-meeting/contact/