: General
Xerrada informativa sobre la premutació i la XUECSesión informativa sobre la premutación y la XUECInformative speech: XUEC and premutation

On Thursday 3 of March, the Catalan Association of Fragile X Syndrome prepares a talk for its associates that will raise the need of knowing the premutation of the gene that causes the syndrome and, at the same time, will present the XUEC. The meeting will count with Adriana Costal, responsible of the research “Intrafamiliar communication in

Psicologia i malalties minoritàries a la UBPsicología y enfermedades raras en la UBPsychology and rare diseases at University of Barcelona

On Wednesday 15th of March, Asociation’s educators, Anna and Rafa, took part of the event organised by Feder on UB psychology school. The talk treated the minoritary illnesses from a psychological point of view. The act was aimed to those future psychology professionals, since it is necessary to approach the reality of the diagnosed families

El Dia Mundial de les Malalties Minoritàries deixa un missatge optimistaEl Día Mundial de las Enfermedades Raras deja un mensaje optimistaThe Rare Diseases' Day sends an optimistic message

The Rare Diseases Day hosted by the Sant Joan de Déu Hospital sent an optimistic message of future. The scientific professionals point the potential of the new projects out, even tough it is still in an initial phase. As it was foreseen, the meeting held a big variety of professionals of the medical field that expressed the joy of the political

El RCD Espanyol, solidari amb les Malalties MinoritàriesEl RCD Espanyol, solidario con las Enfermedades MinoritariasRCD Espanyol contributes to the investigation of rare diseases

The RCD Espanyol, through the delegated councillor of the entity, Ramon Robert, has delivered a 4.000 euros cheque to the Catalan Federation of Minoritary Diseases (FECAMM). Ramon Robert kept the club’s promise to give the Running 1900 collection celebrated on 13 of November. The Federation insists on expressing its gratitude to RCDE,

Èxit de convocatòria de la Passejada en Roda PetitaÉxito de convocatoria de la Passejada en Roda PetitaThe fourth edition of 'La Passejada en Roda Petita' was a truly success

El matí d’aquest diumenge 19 de febrer, més de 200 persones van inundar els carrers de la Vila de Gràcia per donar a conèixer la Síndrome X Fràgil. El Col·legi La Salle Gràcia i l’Associació Catalana Síndrome X Fràgil (ACSXF) van organitzar la quarta Passejada en Roda Petita, un acte ja assentat al  barri de Gràcia que ha registrat

Dia Mundial de les Malalties Minoritàries a Catalunya 2017Día Mundial de las Enfermedades Minoritarias en Catalunya 20172017 Rare Disease Day in Catalonia

On Tuesday 28 of February, we will celebrate the Rare Disease world day. The act will take place in the auditorium of Sant Joan de Déu Hospital (c/ Santa Rosa, 39-57, Esplugues de Llobregat) and focus the research issue. The day aims to remark the importance of the research in order to widen the knowledge of rare diseases. All the attendees will

Betevé parla sobre les malalties minoritàriesBetevé habla sobre las enfermedades minoritariasBetevé rises the minoritary diseases issue

On Tuesday 14 of February, the program Deuwatts of Barcelona Television the minoritary illnesses issue from the point of view of the familiar core and its routine in regard to the illness. The scientific television program shows the daily struggle of the families and their medical, social and familiar experiences. Everything through the example

 Èxit de la campanya d'inclusió social #MiVotoCuenta  Éxito de la campana de inclusión social #MiVotoCuenta  #MiVotoCuenta campaing of social inclusion, considered a great success

The campaign driven by Plena Inclusión, CERMI and Down España in favour of the right of vote of the people with any recognised disability has succeeded. In addition to the demonstration realised in front of the Constitutional Court, the hashtag and lemma of the protest, #MiVotoCuenta, has been national trending topic on Twitter. The demand of the

Nova estratègia d'inclusió social a la ciutat de BarcelonaNueva estrategia de inclusión social en la ciudad de BarcelonaBarcelona's new social inclusion strategy

On January, a methodological proposal to drive a strategy of social inclusion and reduction of the inequalities in the city of Barcelona was debated and presented. The strategy, that will be developed through the following 10 years, pretends to agglutinate the performances of social inclusion of all the actors of the city. It also aims to cohere

Nova via d'investigació per la X FràgilNueva vía de investigación para el X FrágilNew Fragile X Syndrome investigation

According to EFE news Agency journalist Noemí G. Gómez, a group of researchers has discovered a new way to research the Fragile X Syndrome. The discovery is based in a molecule that can help to improve the learning capacity of the patients in cases of severe autism and even partially treat the alzheimer. Both afectacions are caused by an unusual