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Tuesday 19 February 2013

Rare Disease Day 2013 - Feb 28

Rare Disease Day 2013 - Feb 28

Find out what is happening close to you on Rare Disease Day Feb 2013
Its our chance to get our rare disease Tarlov Cysts talked about in a public way
Love Sharon xx



Events around the world for Rare Disease Day 2013

Whether its winter or summer where you are, the spirit of Rare Disorders without Borders is manifesting in events in over 60 countries. See some events below and visit http://www.rarediseaseday.org/country/finder for the full list.
  1. WOW. Thanks for all your great photos added to the photostream (http://www.flickr.com/photos/rarediseaseday/ ) yesterday. This one is from a man living with Spinal Muscular Atrophy. Find out more ways to break down borders for rare disorders here:http://www.rarediseaseday.org/article/get-involved
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    14 DAYS AGO
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  2. Rare disease patient stories are featured on the radio in the Czech Republic during February.  
  3. OS METODEJ, Czech Republic
    FLICKR.COM
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    43 YEARS AGO
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  4. Marissa will bring Rare Disease Day to her campus in Alaska, United States. 
  5. Global awareness event spreads to Alaska
    Amelia Cooper/Sun Star Reporter January 29, 2013 "Honestly, until a few months ago I had no idea such a thing existed," graduate student ...
    AMELIA COOPER
    ·
  6. Japan is celebrating Rare Disorders without Borders. 
  7. RDDのご案内｜Rare Disease Day レアディジーズデイ　世界希少・難治性疾患の日
    2月最終日に行われるレアディジーズデイ世界希少・難治性疾患の日ウェブサイトです。
    RAREDISEASEDAY
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  8. Event in Australia focuses on young people. 
  9. Forum for Young People Living with Rare Disease:
    The challenges of the many transitions to adulthood!

    SAVE THE DATE!!! Saturday 23rd February 2013 8.30AM TO 2.30PM The University of Sydney, New Law Building, Camperdown

    Do you have a rare disease or condition? 15 to 21 years old?
    Then we want to hear from YOU!

    It’s not just about transitioning from child to adult health services. We want to h...ear about other transitions you might be going through: final exams, higher education, employment, relationships…

    •Connect with other young people with similar experiences
    •Share your views and focus attention on issues that matter to you
    •This is your opportunity to contribute to advocacy for better health and community services for young people living with rare disease
    •Hear from inspirational young people living with a rare condition

    A limited number of support packages will be available to help with costs of young people attending from rural areas of NSW and interstate

    For more information, please contact APSU - apsu@chw.edu.au
    20 DAYS AGO
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  10. Event at the University of Zurich, in Switzerland, organized by the Swiss Alliance for Rare Diseases, ProRaris. 
  11. 3ème Journée Internationale des Maladies Rares en Suisse Samedi 23 février 2013 | Université de Zurich – Irchel

    3. Internationaler Tag der Seltenen Krankheiten in der Schweiz
    Samstag, 23. Februar 2013 | Universität Zürich – Irchel

    3a Giornata Internazionale delle Malattie Rare in Svizzera
    Sabato 23 febbraio 2013 |Università di Zurigo – Irchel
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    A MONTH AGO
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  12. Dublin plays host to national rare disease conference. 
  13. rarediseaseday
    Rare Disease Day@rarediseaseday
    Follow @RDWB13 for more info on an All-Ireland #RareDiseaseDay Event in City Hall Dublin on Feb 28 Prog:tinyurl.com/cg99xfu
    7 DAYS AGO
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  14. Brasil will host even more activities than last year. 
  15. Porque ser RARO é ser normal! Dia 28/02/2013
    Dia Raro em Brasilia!
    Envolva-se!
    Divulgue,Participe!!! — at Brasília.
    MARY SILVA
    ·
    20 DAYS AGO
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  16. 12 events are happening in 5 cities across Colombia for this year's Rare Disease Day. 
  17. ¿Sabías que FECOER promueve más de 12 eventos en
    FACEBOOK.COM
    ·
    5 DAYS AGO
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Sharon at