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About the Congress

What is the EB World Congress?
EB World Congress is an independent, global congress on epidermolysis bullosa (EB) bringing together the world’s leading experts in EB research, clinical management, and the EB Community.

This pooling of state-of-the-art knowledge across the key stakeholders not only gives guidance to the professionals involved in EB, but also helps in the development of strategies for the research, regulatory, funding, and healthcare communities.

Fostering strategic and collaborative work with emphasis on current scientific and clinical data, this meeting makes a difference in the world of EB and helps raise awareness of the condition.

This inaugural event (EB 2020) is being organised by DEBRA UK and supported by an alliance of more than 20 rare disease and dermatology organisations worldwide.

When and where is the next EB World Congress?
The first EB World Congress, EB 2020, will take place from 19 to 23 January 2020 at the Park Plaza London Riverbank hotel.

What can I expect at the event?
EB World Congress is divided into three main congress areas: research, clinical management, and the EB Community.

The first three days will have a combined emphasis on research & clinical management, whilst the final day will be community based and incorporate the DEBRA International meeting.

Please see the Congress programme for more detailed information on sessions available (coming soon).

What is the official language of the Congress?
English is the official language of all EB World Congress events. Translation services are not provided at this event.
Who should I contact about sponsoring EB 2020?
Please direct all sponsorship queries to Jenny Jackson, Sponsorship Lead at


What is included with the registration fee?
The registration fee allows access to the Congress (either full Congress or single day, dependent upon the type of ticket), exhibition hall, and welcome drinks reception as well as complimentary tea/coffee and buffet lunches.

Everyone is invited to a complimentary welcome drinks reception on Sunday, 19 January 2020 (19:00 - 20:30). The remaining evenings are at your disposal for your own arrangements.

Please note: whilst a free event, you must still select the number of tickets for the welcome drinks reception if you plan to attend.
Who is eligible for reduced rates?
Faculty and plenary speakers, event volunteers, and participants in the bursary scheme are eligible for reduced rates.
Who is eligible for the bursary scheme?
Students, postdocs, and delegates from developing countries are encouraged to apply for the bursary scheme. Contact for more information. Successful applicants will have either the full or part of their registration reimbursed.
Can I transfer or cancel my registration and other tickets?
No, your registration cannot be transferred to another person.

Yes, your registration can be cancelled and reimbursed within the following terms:

  • On or before 30 June 2019 = 100% refund
  • On or before 31 October 2019 = 50% refund
  • After 31 October 2019 = 0% refund

All cancellation requests must be sent by email to Cancellation is subject to a £ 25 (+ VAT) administration fee for handling the request.

What payments are accepted for registration and other ticket fees?
All fees must be paid online via debit/credit card using our secure payment system. Invoices can be produced on request subject to a £ 25 (+ VAT) administration fee for handling the request.

If you are from a company sponsoring EB 2020, please liaise directly with Jenny Jackson, Sponsorship Lead at for all payments related to your sponsorship.
Why do I have to pay VAT?
The Congress organisers are based in the United Kingdom and must comply with local laws. It is against the law not to charge for VAT (value added tax). VAT is reclaimable for VAT-registered organisations based in the United Kingdom.
Can I purchase an exhibitor badge?
There is not an option for exhibitor badges. If you are an exhibitor, please liaise directly with Jenny Jackson, Sponsorship Lead at for more information.
Am I able to purchase additional tickets after I have already registered for the Congress?
Yes, each delegate will create their own EB World Congress profile, which is linked with the mobile app and registration. You will be able to purchase additional tickets after registration by logging in to your EB World Congress profile and purchasing the tickets in the same manner as you did to purchase your Congress ticket(s).
How do I register for the Congress?
Please use this website to register for the Congress and to purchase any of the extra ticket options.
Do I need to provide proof I am a scientific or medical professional or a member of an EB organisation?
Not at the registration phase. We may, at any time, perform a random audit of the delegate list at which time you may be asked to verify credentials for any type of Congress ticket.
What do I do if I lose my badge at the Congress?
Don’t worry; you will still be able to access the Congress via the official EB World Congress mobile app, which will have your registration details linked to your profile.

If you do not have access to a device that allows you to use the mobile app, you will be issued with a new/temporary replacement badge. There is a £ 25 (+ VAT) administration fee associated with this.
What are the registration fees and deadlines?
Please visit the registration page of this website for more information on all ticket fees and deadlines.
When can I request an invitation letter?
Invitation letters can be requested only after completion of the registration and full payment. If you require an invitation letter, please contact
What if the Congress is changed or cancelled?
The Organisers have the right to make any necessary changes to ensure the overall success of the Congress.

The Congress may be changed to a different date, cancelled, or have its timeframe changed by the Organisers as a result of:

  • a) any negative circumstances beyond anyone's control; and/or
  • b) extenuating circumstances beyond the control of the Organisers.

In the case of postponement or change of timeframe, purchased Congress tickets will remain valid.

In the case of cancellation, 50% of the Congress registration costs will be refunded.

EB Community

Why should I attend this event?
The final day of the Congress focusses on the EB Community. On this day, you will be able to hear updates on EB research, best practice care techniques, community stories, and more.
Where is my nearest EB patient group?
There are multiple groups around the world providing care and support to the EB Community.

With a presence in more than 50 countries, DEBRA International is the world’s leading EB patient advocacy and support network.

If there is not a group in your country, please contact EB Without Borders for any queries.
I am at the Congress in London and need urgent help with my EB. Who do I contact?
If you need urgent medical attention, dial 999 for the emergency services.

For out-of-hours medical help, please dial 111.

For less urgent medical assistance, visit your General Practitioner (GP) or local GP surgery.

Please visit the NHS website for more information.

Will medical supplies or care be provided at the Congress?
No, to comply with local laws and regulations, no medical supplies (e.g. dressings, prescriptions) or care of any kind will be provided at the Congress.

It is important that anyone requiring medical supplies or care should arrange this before travel.

Research and healthcare professionals

Who can I contact to learn about treating EB patients in my own country?
Visit EB-CLINET or contact the EB-CLINET team via to find local EB healthcare professionals currently treating patients.

Please contact DEBRA International for more information on training grants.

If there is not a group in your country, please contact EB Without Borders.
Are grants available for research and healthcare professionals?
Yes, a small number of grants and bursaries are available. Contact for more information.
Do I have to specialise in EB or other dermatological conditions to attend?
No, EB World Congress is available to all research and healthcare professionals regardless of their field of expertise. In fact, the organisers encourage professionals from all fields to attend in the hope of furthering collaboration and knowledge sharing.


I want to interview one of your speakers, who do I contact?
All press queries should be sent to
Will I be able to speak with members of the EB Community?
Yes, many members of the EB Community are willing and proactive in speaking to the media.

However, the organisers want to ensure the safety and safeguarding of any vulnerable children and adults; therefore, all media interview requests must be pre-arranged prior to the event.

If you wish to speak to a member of the EB Community whilst at the event, please contact to provide more details of the request. Upon approval, the team will help liaise with potential contacts.

EB World Congress contacts

General enquiries
Sponsorship and exhibition
Scientific programme
International communications
Marketing and communications