NEWS

Jun 27, 2023

DEBRA France hosts its annual meeting of families in Paris

On April 1st, DEBRA France hosted its annual meeting in Paris. 30 families came together for the first time since the COVID-19 pandemic.

Jun 26, 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 26, 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 22, 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 22, 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 18, 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 13, 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.

May 31, 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 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'

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 3, 2023

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.