chiari y siringomielia
  • Petitioned All those affected by Chiari and syringomyelia

This petition was delivered to:

All those affected by Chiari and syringomyelia

chiari y siringomielia

    1. MARTA Fernandez de Gamboa Fernandez de Araoz
    2. Petition by

      MARTA Fernandez de Gamboa Fernandez de Araoz

      MADRID, Spain

 

Dear friend affected by Chiario no:

We get in touch with you to make you a proposal: Many Chiari affected different countries consider it important to create an international day of our disease and related diseases to meet the following objectives:

- To show the Chiari social level through the media that would echo that day, which will help the affected us feel more understood by friends, neighbors and coworkers.

- To impart information to train the patients and their families to recognize symptoms. For example sleep apnea: many affected children may have sudden death and that the mothers of those affected would not know but receive information.

- To raise awareness among primary care physicians and pediatricians to become informed and learn how to diagnose it.

The United States welcomes the September 16 International Day of Chiari how. Propose also set national days of the disease. Each country could choose its own.

Please HELP US AND SIGN HERE http://www.change.org/es/peticiones/chiari-y-siringomielia

 

We also believe important to form an International Federation of Chiari in order that all countries enjoy the same information and can meet any advance or research carried on Chiari and its related pathology.

The task at hand is arduous and difficult but to get something positive is the best way to organize and provide ideas for the sole purpose of helping those who suffer, to avoid delay in diagnosis and ensure that there are centers for conducting the necessary tests such as RSM, CT, X-ray, laboratory, sleep studies and evoked potentials before deciding whether the solution is surgery.

We ask all your help and I encourage you to form part of existing partnerships or the like believe that they can join the Federation.

We thank you all and we send a message of hope and lots of encouragement to keep going.

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    Supporters

    Reasons for signing

    • Maria Lopez SOCORRO, TX
      • almost 2 years ago

      Porque yo misma tengo Chiari y es necesario educar a otras personas en lo Arnold Chiari significa....

      REPORT THIS COMMENT:
    • Jill Lowery LEOMA, TN
      • almost 2 years ago

      I have Chiari, Syringomyelia, Tethered Cord Syndrome, Elhers Danlos Syndrome, Eagles Syndrome and many more of Chiari's related syndromes & illnesses.

      REPORT THIS COMMENT:
    • maria cristina ontiveros CAPITAL FEDERAL, ARGENTINA
      • almost 2 years ago

      porque me entere hace unos meses que sufro de chiari y me gustaria que se informara mas sobre esta y otras enfermedades raras que sufren mucha gente y que traten de investigar mas para poder aliviar a las personas como yo y como ustedes no es facil vivir asi..

      REPORT THIS COMMENT:
    • Marti Babb DENVER, CO
      • almost 2 years ago

      I have been living the struggle with Chiari for over 13 years. The indifference & lack of quality of care from the medical community is heart breaking. I will fight for all of us who deserve support

      REPORT THIS COMMENT:
    • Kimberly Herget PORT RICHEY, FL
      • almost 2 years ago

      I have Chiari Malformation Type 1

      REPORT THIS COMMENT:

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