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.
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NEWS
May 27, 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 27, 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 24, 2023
DEBRA Italia and Fondazione Reb celebrate charity concert 'MUSIC AGAINST DIFFERENCES'
DEBRA Italia and Fondazione Reb celebrate charity concert 'MUSIC AGAINST DIFFERENCES'
May 23, 2023
DEBRA Germany hosts EB families weekend
DEBRA Germany had a wonderful weekend with a group of EB families in Schmallenberg/ Sauerland.
May 23, 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 18, 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 16, 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 4, 2023
DEBRA International attends the 2023 EWMA Conference
DEBRA International attends the 2023 EWMA Conference
May 3, 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.
Apr 30, 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.
Mar 13, 2023
Yasmin El Samra Foundation-DEBRA Egypt 'draws' interest in their annual competition
Every year, the Yasmin El Samra Foundation-DEBRA Egypt in cooperation with El Sawi Wheel Center in Cairo has held a drawing competition.
Mar 10, 2023
DEBRA Ireland launches an EB Expert Panel to help shape its support and research priorities
An EB Expert Panel was launched by DEBRA Ireland to help shape their support and research priorities.
Mar 8, 2023
Celebration of the 15th World Day of Rare Diseases in Colombia
On 26th February, the 15th World Day of Rare Diseases was commemorated in the city of Bogotá, Colombia.
Mar 7, 2023
DEBRAs International and Egypt attend the MENA Organisation for Rare Diseases 2023 meeting in Dubai
DEBRAs International and Egypt attend the MENA Organisation for Rare Diseases 2023 meeting in Dubai
Mar 1, 2023
First health workshop "Salud sin Fronteras" ("Health without Borders") held in Mexico
The free workshop was held over two days and aimed at healthcare professionals, the EB Community, patients, and families.
Feb 28, 2023
Nada Ashraf from Egypt shares her story this Rare Disease Day
Nada Ashraf from Egypt shares her story this Rare Disease Day
Feb 28, 2023
Your members' chance to participate in “The story of my skin” Art Contest
The Art Contest called “The story of my skin” started on 28th February during International Rare Disease Day and will finish on 30th May.
Feb 24, 2023
DEBRA UK commissions EB patient insight study
DEBRA UK has commissioned a specialist medical research agency to conduct a detailed EB patient insight study on their behalf.
Feb 22, 2023
EURORDIS Photo Awards 2023
'Smile to life, whatever the obstacles'
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