Collected
3.320€
To benefit
Help us achieve our main goal for 2026
Our purpose for 2026 is clear: to ensure that the new gene therapy Vyjuvek is incorporated into the National Health System as soon as possible
Collected
3.320€
Goal
45.000€
Donations
65
Left
31 days
In support of
Cause lead by
Category
This year, Europe approved Vyjuvek, the first gene therapy for Epidermolysis Bullosa (Butterfly Skin). A treatment capable of closing wounds and transforming lives. However, eight months after its approval, it has still not reached Spain.
And we cannot wait any longer.
Our purpose for 2026 is clear: to ensure that Vyjuvek is incorporated into the National Health System as soon as possible.
The medicine already has a national code and all the required reports are on the table, but Spain is now entering a price and reimbursement negotiation process that lasts an average of 20 months.
Twenty months! During this time, families living with Epidermolysis Bullosa will continue to suffer open wounds every single day and will accumulate more than 13 million minutes of avoidable wound care — the equivalent of 26 years of uninterrupted pain.
We cannot allow this to happen.
That is why, in 2026, we need to intensify our work in awareness-raising, policy advocacy, and rights defence in order to accelerate every step until Vyjuvek reaches those who need it. We have designed a roadmap with a total cost of €74,000, of which €45,000 is still to be funded.
Your support is essential to ensure that families living with Epidermolysis Bullosa in Spain can access this gene therapy — a treatment that will mark a turning point in their lives.
Please, help us make it possible.
Imagina no poder abrazar a tu bebé por miedo a hacerle daño. La Piel de Mariposa es una enfermedad de tipo genético, rara e incurable que provoca una extrema fragilidad de la piel, causando heridas y ampollas por todo el cuerpo ante el más leve roce. Su piel es tan frágil como las alas de una mariposa
Una de cada 227 personas somos portadoras del gen defectuoso que provoca la enfermedad, por lo que esta puede irrumpir en cualquier familia de forma inesperada. La Asociación Piel de Mariposa (DEBRA España) es una organización sin ánimo de lucro que trabaja para mejorar la calidad de vida de los afectados y sus familias. Tú también puedes aportar tu granito de arena. www.pieldemariposa.es
About DEBRA, the Butterfly Children Charity:
Imagine not being able to hug your baby because you are afraid of hurting it. Because it was born with a rare genetic condition called Epidermolysis bullosa (EB) also known as Butterfly Skin. An incurable condition that causes blisters and wounds with the slightest touch. The skin is as fragile as the wings of a butterfly. DEBRA, the Butterfly Children Charity is a non-profit organization that works to improve the quality of life of those affected and their families.
If you would like to know more about DEBRA, the Butterfly Children Charity and our work please visit www.butterflychildrencharity.com
Donators (65)
Anonymous
5€
16 hours ago
Javier
200€
17 hours ago
Laura
10€
18 hours ago
Analu
5€
21 hours ago
Guillem
35€
One day ago
Laura
35€
3 days ago
Granados Carmona
35€
4 days ago
Anonymous
Hidden donation
4 days ago
Gonzalo
20€
4 days ago
Anonymous
10€
5 days ago
Paula
100€
5 days ago
Rafael
20€
5 days ago
Noemi
10€
5 days ago
Alvaro García Pérez
10€
5 days ago
Paula
50€
6 days ago
Daniel
50€
6 days ago
María de Luna
50€
6 days ago
Anonymous
35€
7 days ago
M. de los Desamparados Pérez Orgaz Pérez
50€
7 days ago
Candelaria
5€
10 days ago
Anonymous
Hidden donation
12 days ago
Luis
10€
16 days ago
Anonymous
10€
18 days ago
Anonymous
Hidden donation
19 days ago
Sanchez cobian
500€
20 days ago
Macarena
35€
21 days ago
Anonymous
20€
22 days ago
Anonymous
100€
22 days ago
Pepi Martinez
5€
26 days ago
Anonymous
100€
28 days ago
Anonymous
Hidden donation
28 days ago
Teresa Alvarez
10€
28 days ago
Aina
75€
30 days ago
Esther
20€
34 days ago
Natividad
35€
35 days ago
Anonymous
Hidden donation
35 days ago
Maite
50€
36 days ago
Ana
75€
37 days ago
Cristina
3€
38 days ago
Gena
10€
39 days ago
Lourdes
Hidden donation
40 days ago
Maria Isabel
10€
41 days ago
Graham
20€
41 days ago
Angelica
50€
41 days ago
Noelia Torres Rodríguez
20€
41 days ago
Anonymous
Hidden donation
41 days ago
Ana
5€
41 days ago
Laura Casillas
35€
42 days ago
María Victoria
5€
42 days ago
Ana
15€
42 days ago
Comments (11)
Javier
Mucho ánimo y ayuda para estos pobres niños y para Leo.
Granados Carmona
Aqui va mi granito de arena
María de Luna
Maravillosa iniciativa y maravillosa difusión que hacéis para su concienciación. Ojalá y poder alcanzar el reto. Ánimo, os abrazo con el corazón.
M. de los Desamparados Pérez Orgaz Pérez
Ánimo !!
Pepi Martinez
Ojalá lo consigas 💪
Gena
Mucho ánimo!!!
Ana
Ojalá y llegue pronto,para todos aquellos que sufren esta enfermedad.estan importante para ellos. Lo sé porque tengo una personita muy allegada que la sufre.y a ojalá este 2026 sea un año mejor para todos ellos.
Laura Casillas
Ánimo!
Carmen
Mucho ánimo pequeño!! Toda nuestra fuerza
Ricardo
Tengo mariposas en el alma