Empowering girls in Egypt
The objective of the foundation is to encourage EB patients interested in drawing and learning crafts.
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NEWS
- 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 14, 2023
Video highlights of DEBRA Ukraine's activities supporting its members during war time
The video demonstrates the sterling work by the group to support its members and EB patient community in times of extreme adversity.
- 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.
- May 28, 2023
DEBRA Australia's 'Butterfly Breaks'
DEBRA Australia is thrilled to offer the 'Butterfly Breaks' program, providing much-needed respite for individuals, couples, and families.
- May 25, 2023
DEBRA Italia and Fondazione Reb celebrate charity concert 'MUSIC AGAINST DIFFERENCES'
DEBRA Italia and Fondazione Reb celebrate charity concert 'MUSIC AGAINST DIFFERENCES'
- May 24, 2023
DEBRA Germany hosts EB families weekend
DEBRA Germany had a wonderful weekend with a group of EB families in Schmallenberg/ Sauerland.
- May 24, 2023
US FDA gives its first approval for new treatment for dystrophic EB
Krystal Biotech has received FDA approval for the first-ever redosable gene therapy, VYJUVEK™.
- May 19, 2023
DEBRA UK completes its largest ever EB patient insight study
DEBRA UK completes EB patient insight study to better understand how EB impacts a patient's life and the type of care they receive.
- May 17, 2023
EB Clinet Online Seminar: Nutritional Needs & Anemia in Adults with EB
The next EB Clinet Online Seminar is dedicated to the topic of 'Nutritional Needs and Anemia in Adults with EB'
- May 5, 2023
DEBRA International attends the 2023 EWMA Conference
DEBRA International attends the 2023 EWMA Conference
- May 4, 2023
ERN Skin meeting held in Paris attended by DEBRA representatives from Ireland, Croatia, and Belgium
ERN Skin meeting held in Paris attended by DEBRA representatives from Ireland, Croatia, and Belgium
- May 3, 2023
DEBRA Chile holds 2nd Research Day for EB patients and families
DEBRA Chile holds 2nd Research Day for EB patients and families.
- May 1, 2023
New clinical trials online tool goes live
EB Research Network has created a new online tool to make tracking of clinical trials easier
- Mar 23, 2023
DEBRA Croatia celebrates Rare Disease Day
DEBRA Croatia celebrated Rare Disease Day with a radio & television feature, Zoom lectures, & took part in an event by Rare Disease Bahrain.
- Mar 15, 2023
EURORDIS Black Pearl Awards 2023: United for Ukrainians Living with a Rare Disease
Orphan Diseases of Ukraine received the EURORDIS Black Pearl Award: United for Ukrainians Living with a Rare Disease.
- Mar 14, 2023
DEBRA Colombia attends the 33rd National Congress of Dermatology
DEBRA Colombia was invited to attend the trade show with a stand to continue raising awareness of EB and care routes in Colombia.
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