DEBRA groups hold COSEB workshop: working towards harmonization of outcomes in EB
The COSEB workshop was held by the COSEB Steering committee and DEBRA research managers of Austria, France, Ireland, Spain, and the UK.
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NEWS
- Jan 16
DEBRA International wins EURODIS member award
DI has received the EURODIS Member Award for the support of the rare disease community affected by conflicts and natural disasters.
- Dec 21, 2023
DEBRA International Roundtable of Companies first in-person group meeting
On Tuesday 12th December 2023, the DEBRA International's inaugural Roundtable of Companies held the first in-person group meeting in London.
- Dec 21, 2023
Last call to get patients involved in the GRIDD study
The online survey takes 10-20 minutes to complete and is open only until December 31, 2023.
- Dec 20, 2023
DEBRA UK's grant call for 2024
UK and international applications are invited from 1st February – 31st March 2024 for DEBRA UK project grant and small grant award...
- Dec 18, 2023
DEBRA France holds 4th annual EB professionals meeting in Paris
The DEBRA France Association organized its 4th annual meeting of epidermolysis bullosa professionals at the Necker Hospital in Paris.
- Dec 15, 2023
New international research projects from DEBRA Austria and EB Resnet
Contracts for two new research projects have been successfully issued by EB Resnet 2022.
- Dec 14, 2023
New EB patient organization in Bulgaria
Association Epidermolysis Bullosa is a new Bulgarian patient organization, created in July 2023 by patients and parents of EB children
- Aug 23, 2023
DEBRA Colombia's 29th Patient Gathering Event
The DEBRA Colombia Foundation held a note-worthy Patient Gathering Event in Bogota from May 5th to 7th for patients with EB
- Aug 22, 2023
Building smiles and empowering Butterfly Children- research and webinar on oral health and QoL
DEBRA Indonesia hosted a free webinar to increase awareness and knowledge of oral and dental health for EB patients
- Jun 27, 2023
Celebrating two years of support in Indonesia: a recap of DEBRA Indonesia's events
The group has held several online and in-person events to cater for its EB patient and healthcare communities in the archipelagic country.
- Jun 27, 2023
Charity run funds raised for DEBRA Germany
DEBRA Germany was one of four charitable causes that received funds raised from a charity run held on June 17th by the Lions Club Bidenkopf.
- Jun 27, 2023
DEBRA South Africa takes part in Dermatology Nursing Workshop
The nurses were educated on EB and how to take care of babies' wounds with the resources available to them in their respective centres.
- Jun 27, 2023
Funds raised for DEBRA Colombia through the HEELP Program
Heel Colombia has set forward a plan to rewrite the future with the purpose of transforming lives through different projects.
- Jun 25, 2023
Empowering girls in Egypt
The objective of the foundation is to encourage EB patients interested in drawing and learning crafts.
- Jun 23, 2023
Prizes awarded to DEBRA representatives at GlobalSkin Conference 2023 ELEVATE
Two DEBRA reps were recipients of the Patient Leader Awards honoring leadership of GlobalSkin members at local, regional, and global levels.
- Jun 23, 2023
DEBRA International attends GlobalSkin Conference 2023 ELEVATE
It proved a wonderful opportunity for various DEBRA/EB delegates to connect, strategise, and discuss priorities for their communities.
- Jun 19, 2023
Graeme Souness swimming the English Channel for DEBRA UK
Graeme set a lofty target of raising £1.1 million from the Channel swim, which has now been surpassed with well over £1.2 million raised.
- Jun 1, 2023
DEBRA Spain works to ensure families receive the best possible level of care
From appealing for greater healthcare professional presence and attending the paediatric palliative care conference to 31 family visits.
- May 28, 2023
DEBRA Egypt holds arts and crafts lessons for girls with EB that helps raise funds for those with EB
With the help of volunteers, the Foundation has started the arts and crafts lessons of candle making with the girls for the past two months.
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