This morning the Institutional Act of FEDER (Spanish Federation of Rare Diseases) was celebrated as a commemoration of 28F, World Day of Rare Diseases, in the plenary hall of the Caravaca City Council. The Council of Health of the region of Murcia, Encarna Guillén, the Mayor of Caravaca, José Moreno, the President of FEDER, Juan Carrión, as well as several general directors of the Community of Murcia attended. It has given voice to those affected by rare diseases, being Conquistando Escalones part of it, in an act where the attendees have been able to hear the testimony of what has been, is and will be the life of a patient with our Limb-girdle Muscular Dystrophy 1F, as well as what Conquistando Escalones is and what it has already achieved. We have pointed out that, as this year’s World Rare Disease Day slogan says, “Research is our hope” and the importance of the public administration support in this regard. We thank all attendees for their support and affection, in an act that has turned out to be really emotional.
How to help Conquistando Escalones: https://www.conquistandoescalones.org/en/how-to-help-us/
Donate in the crowdfunding campaign of the investigation of the team of Dr.Alcamí from the Institute Carlos III of Madrid: https://www.precipita.es/proyecto/el-tratamiento-de-una-enfermedad-muscular-rara-la- Lgmd-1f-mas-cerca-gracias-al-vih.html