Mónica Esthern

Nuestro lema es Niños contra la Laminopatía, en concreto del tipo L-CMD. Recaudamos fondos para la investigación de esta grave enfermedad, rara entre las raras, con el sueño de encontrar curación a la misma. No se conocen más de 50 ó 60 casos registrados en el mundo, lo que hace que ni los laboratorios farmacéuticos ni los estados investiguen esta enfermedad, todo debemos conseguirlo los padres con fondos privados. Es una enfermedad degenerativa que en pocos años tiene un desenlace fatal.

Somos la Asociación Niemann Pick de Fuenlabrada.Padres y amigos que luchan para acabar con ésta terrible enfermedad neurodegenerativa, genética y mortal. ¿Imagináis ver a vuestro hijo perder facultades día a día? Nuestra esperanza es la Terapia génica, la CURA de nuestros hijos, tenemos un equipo de investigación y necesitamos de vuestra ayuda, os estaremos eternamente agradecidos. Visítanos en Facebook y conócenos. ¿Nos ayudas? Asociación Niemann Pick Fuenlabrada Viviendo con Niemann pick

Lucia suffers from a terribly painful rare disease, Reflex Sympathetic Dystrophy, with torsional dystonia and myoclonus (convulsive movement disorders). She has been in tremendous pain day and night for almost 10 years. The treatments that she has undergone so far have been unsuccessful, she is getting worse and worse and the disease continues to advance through her body, but we cannot give up, right now we are hoping for something new. We need your help to achieve it.

Chloe is a wonderful girl who has been fighting against ultra rare and unknown disease since 2011, she is the only one affected in Spain, ONLY 20 cases are known in the world. I am her mother and I fight to finance research at the IGTP in Barcelona, the objective? stop the motor deterioration that Chloe suffers and that leads her inevitably to total immobility, there is currently no public institution in our country that is seeking treatment for my daughter www.investigacionparachloe.org

More than 500 patients and their families suffer intestinal failure in Spain. This pathology prevents them from feeding and hydrating themselves naturally. Therefore, they depend on a pump that administers the necessary nutrients intravenously and, sometimes, they need a transplant of up to 6 organs to survive. NUPA is the only national association of affected people. With your help, we will cover the needs of admitted families, providing emergency psychosocial support. Collaborate!