FSH Muscular Dystrohy

Help us raise funds that will be donated to research and treatment of the rare degenerative genetic disease called facioscapulohumeral muscular dystrophy (FSHD), which is characterised by marked facial inexpressiveness and progressive muscle weakness. Those affected experience varying degrees of disability, eventually losing the ability to walk and becoming totally dependent on others for much of their lives. ww.fshd-spain.org

Empfänger und Zweck unserer Spenden:

Registro de Pacientes FSHD

Asociación FSHD-SPAIN

🌟The Spanish Patient Registry is now a reality! 💡Since its launch, we are learning more about the natural history of FSHD! Other extra-muscular manifestations are being discovered, i.e., manifestations that not only affect the muscles, which were not previously thought to be involved. Why is this so important? - The more patients participate and the more complete the information about their symptoms, the more we can learn about the progression of FSHD. - To attract clinical trials to Spain: pharmaceutical companies look for countries with organised and detailed registries, where they can easily find patients who meet the requirements for their studies. - With a solid registry, there is a better chance that trials will be conducted in our hospitals, with our families. 🧠The next step is crucial: hiring a data entry clerk to enter, organise, and update the registry data. To do this, we need €25,000/year. Thank you for making this possible!

Veröffentlicht am
05/09/2017

Website:
http://www.fshd-spain.org

Fortschritte der Gruppe

Daniel García Ortiz
Teaming-Manager

Gestern 13:37 h

Querid@s Teamers,

Queríamos compartir con vosotr@s un vídeo que Teaming ha preparado sobre nuestra enfermedad. El 20 de junio es el día internacional de la FSHD y nos gustaría sumar más apoyos en este Grupo, ¿os animáis a compartirlo con vuestros amigos y familia?

Y también queremos deciros algo desde el corazón: gracias por llevarnos hasta aquí y darnos esperanza. Porque gracias a vuestro euro mensual, estamos cada vez más cerca de atraer ensayos clínicos a España.

Cada pequeño avance hacia la investigación lleva un poquito de vosotr@s.

Gracias por estar ahí y por hacerlo posible.