ISN Representatives
Over 75 virtual volunteers operate the nonprofit International Scleroderma Network (ISN)!
ISN Representatives (Main Page) How to Volunteer
Matilde Acosta
ISN Support Group Leader for Venezuela
English Version Spanish Version

Matilde AcostaHello, my name is Matilde Acosta, ISN Support Group Leader for Venezuela. I have been a patient of systemic scleroderma for 9 years.Nowadays I run the Venezuela Scleroderma Association, an organization of my inspiration.

I wanted to do something sinceI could identify with the loneliness that a patient feels when they know their diagnosis, when they find out that there is no cure, and see that some doctors have no interest in working with them since they are a minority and there is no specific medication for their illness. This leads them to depression, and the impotence someone experiences when they feel there is nothing else they can do.

I followed the Argentinian Association's lead, and I started helping patients, giving them solace and a helping hand, like they have helped me, by means of the webpage HTTP://WWW.ESCLERODERMIAYALGOMAS.COM. I will soon publish the first magazine which should expand the educational outlook for everybody.

The associations from Colombia, Argentina, Venezuela, Puerto Rico, Spain, and the United States, among others, are all in this fight, helping each other find a helping hand, someone who will wish us well, who will help us lift our fighting spirit, our self love, our hopes, our happiness and love of all. "If we push together we'll make it." You can reach me at matilde-acosta@sclero.org.
Related Links
Nuevo Sclero Foro Español: Venezolana

Sclero Foro Espanol, VenezolanaNuevo Sclero Foro Español: Venezolana. La Asociacion Venezolana de esclerodermia, te invita a participar en nuestro foro en español, donde tendrás ademas de informacion y apoyo, elementos necesarios para mejorar nuestra calidad de vida, la oportunidad de conocer y compartir con personas que como tú sufren de de los diferentes sintomas que proporciona ésta enfermedad y de acuerdo a sus experiencias pueden ayudarte a superar la incertidumbre y las dudas. Anímate a participar. Te esperamos con el cariño de siempre. Damos las gracias a la Red Internacional de esclerodermia por esta valiosa oportunidad. Posted 02-26-09. (Also see: Asociación Venezolana de Enfermos de Esclerodermia)

Venezuela Revista: Esclerodermia y Algo Mas (FLASH Document) —Gratis!

Revista: Escleroderma y Algo Mas(Español/Spanish) En la Grupo de Apoyo de Venezuela contra la Esclerodermia: Revista:Esclerodermia y Algo Mas (FLASH Document) —Gratis! Esta es una publicación en español, 41 paginas.

(English) The Scleroderma Support Group of Venezuela (which is an affiliate of the ISN) has published a 41-page online FLASH magazine, in Spanish, Escleroderma y Algo Mas, which is free! Posted 10-29-08.

Welcome Matilde Acosta: ISN Support Group Leader for Venezuela
Matilde AcostaMatilde Acosta: ISN Support Group Leader for Venezuela. I have been a patient of systemic scleroderma for 9 years. Nowadays I run the Venezuela Scleroderma Association, an organization of my inspiration. I wanted to do something since I could identify with the loneliness that a patient feels when they know their diagnosis when they find out that there is no cure, and see that some doctors have no interest in working with them since they are a minority and there is no specific medication for their illness. Posted 05-10-07. (Also see: Venezuela Scleroderma Association )
(Español/Spanish) Matilde Acosta: Líder de Grupo de Apoyo de ISN para Venezuela
Matilde AcostaMatilde Acosta: Líder de Grupo de Apoyo de ISN para Venezuela . Hola, soy Matilde Acosta, Líder de Grupo de Apoyo de ISN para Venezuela . Soy una paciente de esclerodermia sistemica desde hace 9 años, actualmente dirijo la Asociacion de esclerodermia de Venezuela, la cual fué inspirada por mi al sentir el desamparo en que se encuentra un paciente a la hora de saber el diagnostico, acompañado de la noticia de que no hay cura y tampoco interés de algunos galenos de trabajar con estos pacientes ya que representan la minoría y no existen medicamentos especificos para su enfermedad. Posted 05-10-07. (Also see: Venezuela Scleroderma Association )
ISN Translator and Editor: Alba León
Alba Leon, ISN TranslatorAlba León is the ISN Translator for this page. She is studying international relations in Mexico City.
Keep on Surfing!
Go to Aron, Torok
Contact ISN. We are a full-service nonprofit scleroderma charitable foundation.

Email Inquiry Form (English)
Email Inquiry Form (Spanish)
Email Inquiry Form (Italian)
Email: isn@sclero.org
Or, post a message in our terrific
Sclero Forums Online Support Group!

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702
USA
Toll Free Hotline in U.S.
1-800-564-7099
Direct Line
1-952-831-3091 (U.S.)

Donate in Memory to the nonprofit International Scleroderma Network at sclero.org. We will make a custom donation form and link for you, and send thank you's and acknowledgement cards. We list donors and events in our website and newsletter.

Please help raise awareness of scleroderma and related illnesses by mentioning and linking to the nonprofit International Scleroderma Network at sclero.org in conversations, speeches, web sites, and publications.

(We are also known as the Scleroderma from A to Z web site.)
© Copyright 1998-2009 International Scleroderma Network
All Rights Reserved