A group of patients in Spain have formed an organization called the Spanish Association for Hypophosphatemic Rickets and Osteomalacia (AERHyO), and are working hard on behalf of the approximately fifty known patients in Spain and the hundreds more that are misdiagnosed or simply haven't been identified. They also held their first patient day on November 17th of this year.
You can read more about their group and the Spanish Agency for Medicines and Health products (the country's equivalent of the U.S. Food and Drug Administration) here:
https://translate.google.com/translate?depth=1&nv=1&rurl=translate.google.com&sl=es&sp=nmt4&tl=en&u=http://www.actasanitaria.com/raquitismo-hereditario-cambio/
https://translate.google.com/translate?sl=auto&tl=en&js=y&prev=_t&hl=en&ie=UTF-8&u=http%3A%2F%2Fwww.diariosigloxxi.com%2Ftexto-s%2Fmostrar%2F258297%2Fpacientes-raquitismo-celebran-manana-primeras-jornadas-familiares&edit-text=
No comments:
Post a Comment
Note: Only a member of this blog may post a comment.