Celebrating European Patients Rights Day
This important day takes place on the 18th of April: it is a marked occasion for open discussion and serves to reinforce commitment to the 14 rights established for European citizens. These rights were established to encourage the cooperation between the different health care providers and to reinforce the degree of protection for patients affected […]
We join the International Awareness Day for Rare Diseases and consolidate our relationship with CIBERER
Today, 29th of February 2020, we join the campaign created by the Spanish Federation for rare diseases (FEDER) “Our hope grows with you” to celebrate world awareness day for EB. With this we would like to underline and communicate the importance of equality when it comes to accessing treatments and care. This must be of […]
Winners of the Albert Jovell prize for the #IHAVEUNDRESSED campaign
We were delighted and honoured to receive a prize valued at 1500€ for the #IHAVEUNDRESSED campaign under the category of “A Campaign aimed specifically at raising awareness and developed by a charity in the health sector” More than 400 people attended the prize-giving event at the Nouvel auditorium at the Reina Sofia museum in Madrid: […]
Actor Antonio Velazquez and Muay Thai world champion, Yohanna Alonso, contributed to raise awareness for EB condition
Dozens of people joined the renowned Spanish actor and the current combat sport world champion, to climb the 1200 m to the top of La Concha Mountain in aid of the Butterfly Children’s Charity. The event was the 4th of its kind and raised € 8000: There are over 500 people affected by EB in […]
Thanks to the #IHAVEUNDRESSED campaign millions of new people know what it is like to live with this disease
#IHAVEUNDRESSED was launched to raise awareness worldwide for EB, in the hope that the day to day of living with this condition can be made just a little bit less painful. Since the launch of the campaign on the 25th of October (timed to coincide with International EB day), it has now reached millions of […]