Saf spain foundation

[salva76]

Dear mary or administrator. .

as you know we create a new foundation in spain. We start to move the knowledge of our patology in facebook and internet.

Like we think we have to work together

So here is more seriusly if we say we work with your foundation and the all information we got in our website is been good translated to spanish. That likes the doctors they dont know the illness but when they visit our website they face chance...

So as a conclussion we need a mail or letter to [e-mail]

which you like a president or administrator of your foundation, you give permission to put all that information in our website in spanish. So that well we want to avoid some people dont believe us like a seriusly foundation.

I would be very glad, if you mail me with that agreement.

And besides in the future we can organize a hughes days together. We are contact with other countries it would be good go together and be contact to try show our illness the society and the medical staff ( many of them they dont have any idea about us)...and push to the doctors others treatment for improving quality of pur lifes...

Many regards

from spain

Salvador monleon

[e-mail]

[Manofmendip]

Dear Salva

I have sent you and Mary a private message about this and have asked her to answer you there.

Best wishes.

Dave

[MaryF Administrator]

Hello, I will have a chat with our charity manager, and ask them, also other people involved with the charity, however another way would be to put a link to our charity pages of our charity in English and then translated, that way you could guide your medical staff to reading our pages. I will come back to you with more detail. Our next patient's day is at St Thomas' Hospital on 13th May/London. Tickets will be on sale through the charity. MaryF

[Hidden]

Hi Salvador. It would be great to work with you on raising awareness, so please contact me at the Hughes Syndrome Foundation charity email: [e-mail].

Best wishes,

Kate Hindle

Foundation Manager

[YvonneW]

Hola Salvador. Me llamo Yvonne y trabajo para la Fundacion de Hughes Syndrome en Londres. La otra persona que trabaja para la Fundación es la director, Kate Hindle. (Mary es un administrador en este foro, no en la Fundación). Por favor, póngase en contacto con Kate para más información y respuestas a sus preguntas : [e-mail].

Para su información, hay un libro en español sobre el síndrome Hughes. Se llama Síndrome Hughes, Una guia párrafo pacientes con sindrome antifosfolipido, por Graham Hughes. Publicado por ALDEC (Asociación Lupus de Cantabria) y en colaboración con El Gobierno de Cantabria y Consejería de Sanidad y Servicios Sociales.

Espero que esto te ayuda. Salud. Yvonne