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What is EB?

Epidermolysis bullosa (EB) is a group of genetic skin conditions which cause the skin to blister and tear at the slightest touch. Those born with EB have skin so fragile they are called ‘butterfly children’ because their skin is as fragile as the wing of a butterfly. Painful open wounds and sores form where this exceptionally fragile skin is damaged – in some cases, internal linings and organs are also affected. Tragically, certain types of EB can be fatal in infancy and others are severely life-limiting. We estimate there to be 500,000 people living with EB worldwide. There is currently no cure.

EB 2020: 

Taking place from 19 – 23 January 2020 in London, UK, for the first time the world’s leading experts in EB research, clinical management, and the EB Community will be brought together in one place – the 2020 EB World Congress. This collaboration of state-of-the-art-knowledge aims to provide guidance to EB professionals, aid in the development of strategies for research, funding, and healthcare communities, and spark collaborations on current scientific and clinical data.This ground-breaking event is being organised by DEBRA UK, and is supported by a global alliance of more than 20 rare disease and dermatology organisations. 

Why attend? Here’s our top five reasons: 

  1. Be there when all the top professionals in EB are gathered in a single place for the first time: As we expect delegates from over 50 countries to attend, this is a phenomenal opportunity to form global unity and synergies in the fight against EB. This is an ideal setting to make face-to-face connections with professionals in the industry, and take advantage of opportunities to share experience, insight, skills, and techniques.
  1. Network with others working in EB and members of the international EB Community: When personal connections and relationships are formed, people are more inclined to share information, ask for advice, and provide professional feedback. As the final day of the congress will be focused on the EB Community members, this is a rare opportunity for professionals, researchers, and the EB Community members to meet, speak, and connect.
  1. Connect with organisations supporting the EB Community and funding research: 

We are expecting a strong presence of EB organisations worldwide along with many companies representing the medical and biopharmaceutical industries. Organisations supporting the EB Community and funding research will be able to meet and interact with those living with EB, their family members, and carers on the final ‘EB Community Day.’ 

  1. Take advantage of media opportunities to help raise awareness of the condition: 

Representatives from industry journals, magazines, and news outlets will be present to report on the Congress. The exposure from this event will reach a global audience and continue building awareness for future events. Frequent updates, photos, and videos from the EB World Congress account will feature speakers, delegates, researchers, professionals, alliance members, and sponsors. Be sure to use the congress hashtags in the lead up and during the event: #EB2020 #EBWorldCongress

  1. Meet with companies investing in EB cure(s), treatments, and quality of life improvements: 

Sponsors and exhibitors will be able to showcase and present their findings throughout the four days and be available for introductions and chats. Learn who’s who when it comes to making a difference and contributing to the world of EB. What better way to help the progression of EB Community, research, and practice than attending the inaugural EB World Congress? Don’t miss this chance to make a lasting contribution. Together, we can do more! Be sure to register for your chance to make a difference in the world of EB:

Rare disease spotlight: EB 2020

by Guest Contributer time to read: 3 min