Epidermolysis bullosa (EB) in Mexico continues to be a rare genodermatosis that is still unknown to most of the health care professionals in the country; many patients are treated without the specialist’s health care that they need and in some cases, we still see how they receive wrong treatment and even wrong diagnosis. Regarding this situation, the severity of some cases, the chronic evolution of the disease, and the financial and social burden that it brings, Dystrophic Epidermolysis Bullosa Research Association (DebRA) of MEXICO was founded as a charity in February 1998 ; however, the spirit of organization was born in 1994 when a small group of volunteers and dermatologists started to see patients with the main purpose to provide medical care, genetic counseling, and advice to patients with EB and their families; to promote collaboration and exchange information among people with EB; to research and find new therapeutic approaches; and finally, to diffuse knowledge and raise awareness of the issues of EB in general public and health care professionals. This spirit is alive in the current organization, whereby day by day there are more patients and people interested in helping the “butterfly kids” or “NIÑOS PIEL MARIPOSA” in Spanish.

DebRA MEXICO has established its main office in Monterrey city and has dedicated health care services for people with EB around Mexico, mainly in cities and villages around Monterrey, in conjunction (directly and indirectly) with national health services (Instituto Mexicano del Seguro Social). Unfortunately, national health services do not cover all the cost of the disease and private insurances do not include coverage for the disease. DebRA MEXICO health care team is formed by dermatologist; pediatric dermatologist; pediatrician; pediatric gastroenterologist; a team of plastic surgeon, geneticist, and psychologist; nutritionals team; and a physical therapist, all of them working as volunteers donating their time to provide patients with EB the highest standards of care, regardless of the patients’ place of living, religion, or even economy.

DebRA MEXICO improved the quality of life of individuals and families affected by EB by providing them dressing materials, drugs, nutritional supplements, transportation and accommodations for foreign patients, and even hand surgeries for pseudosyndactyly, thanks to the fund-raising activities from sporting to social events, taking place mainly in Monterrey city. In the same manner, nutrition and medical students interact with patients and their families in each meeting to educate and involve the new health care workers with the disease.

In the last years, DebRA MEXICO has been gaining experience in managing patients with EB, thanks to the significant contributions made by the support and help from the professional colleagues of DebRA UK, DebRA USA, and DebRA International, specially in symptom relief and optimal management of the condition as well as in clinical research.

DebRA MEXICO works closely with 4 hospital centers of excellence: Centro Dermatológico “Dr Ladislado de la Pascua” and Instituto Nacional de Pediatria, both located in Mexico city, Instituto Dermatológico de Jalisco in Guadalajara city, and Hospital Universitario UANL in Monterrey.

The prevalence of EB in Mexico is still unknown; the main problem is the lack of an immunolaboratory for immunomapping for the diagnosis of EB in Mexico. To address this, DebRA MEXICO, in conjunction with those centers, has been trying to do a National Registry of Patients with EB (Registro Nacional de las Epidermolisis Bullosas [RENAC-eb]).

The Instituto Nacional de Pediatria, the unique center with electronic microscopic diagnosis for EB in Mexico, in the last 5 years has had 29 patients: 9 (32%) with EB simplex, 5 (17%) with junctional EB, and 15 (51%) with dystrophic EB. The Centro Dermatológico “ Dr Ladislao de la Pascua” in the last 20 years has 107 patients: 51 with (47%) EB simplex, 1 (0.93%) with junctional EB, 33 (30.8%) with dystrophic EB, and 23 (21%) with no specific classification. In this Centro, as in the beginnings of DebRA MEXICO (which controls the Northwest and receives patients from all over the country), the diagnosis is based on clinical and histologic findings when available.

DebRA MEXICO, since 1995, has on its clinical registry the following information: 6 (4%) cases of EB simplex, 2 (1.3%) junctional EB, 41 (27%) dominant dystrophic EB, 74 (50%) recessive dystrophic EB, and 23 (15%) without diagnosis. Unfortunately, in the Instituto Dermatológico de Jalisco “Dr José Barba Rubio”, there are no data available.

DebRA MEXICO has been supported by DebRA UK, DebRA International, DebRA America, and recently by DebRA Austria that have been keen to help with immunomapping and molecular studies.

To achieve one of the goals of the organization, DebRA MEXICO has made different research projects in collaboration with DebRA UK, finding a new mutation for COL7A1 in 21 Mexican families. In 1998, the 2470insG/2470insG mutations in type VII collagen gene ( COL7A1 ) were found using molecular analysis. Since then, some papers have published with international collaboration. Furthermore, between 2007 and 2008, the charity performed 30 hand reconstructive surgeries in patients with pseudosyndactyly.

The organization expects to provide dental help and surgeries for patients with EB, promote public understanding of the illness, supply continuous multidisciplinary education, and train the new health care workers to extend throughout the country and spread out DebRA’s spirit to encourage and help the formation of new national EB groups in Latin American countries, such as Costa Rica, Chile, and México have initiated a cooperation to set up the charity DebRA Latinoamerica since 2005, with the firm idea to help patients with EB from all America Latina.

We do believe in our dream and we are sure that with our little help, we can move mountains and make fly “los niños mariposa.”