III CAMINHADA DO DIA MUNDIAL DAS DOENÇAS RARAS NO RIO DE JANEIRO 
Autor: Antonio Jorge de Melo | Publicado: 2017-03-06T05:15:00-08:00

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Por Antonio Jorge de Melo



Ontem (5/3) cerca de 500 pessoas entre pacientes, familiares,
cuidadores, profissionais da saúde e simpatizantes da causa se uniram para a
realização da III CAMINHADA DAS DOENÇAS RARAS, realizada no Aterro do Flamengo
entre 9 e 12 hs. O evento foi realizado a partir da mobilização de mais de 20
associações de pacientes de DR´s, coordenadas pela AFAG. 

Segundo o IBGE o estado do RJ possui cerca de 16.460.000
habitantes, onde mais de 1 milhão desses habitantes estão acometidos por alguma
doença rara, dentre as mais de 7 mil existentes no
mundo.





Doenças
Raras



Criado em 2008, o dia DIA MUNDIAL
DAS Doenças Raras é um evento anual de conscientização, coordenado pela
Organização Européia de Doenças Raras (Eurordis).&nbsp;&nbsp;
Na Europa, uma doença é considerada rara quando afeta 1 em 2.000 pessoas. Já
segundo a&nbsp; Organização Mundial de Saúde (OMS) é a doença que afeta até 65
pessoas em cada 100 mil indivíduos. 



As doenças raras são doenças crônicas
e progressivas graves, muitas vezes com risco de vida. Para muitas doenças
raras, os sintomas podem ser observados ao nascimento ou durante a infância,
como é o caso da atrofia muscular espinhal proximal, neurofibromatose, osteogênese
imperfeita, condrodisplasias ou síndrome de Rett, por exemplo. Mais de 50% das
doenças raras manifestam-se na idade adulta, como é o caso das doenças de Huntington,
Crohn e Charcot-Marie-Tooth, da ELA, do Sarcoma de Kaposi ou do Cancro da Tiróide.



Estima-se que haja 7 mil doenças
raras diagnosticadas, sendo 80% delas de origem genética. Outras se desenvolvem
como infecções bacterianas e virais, alergias, ou têm causas degenerativas. A
maioria (75%) se manifesta ainda na infância dos pacientes, e 30% dos pacientes
morrem antes dos cinco anos de idade. Afetam uma parcela considerável da
população mundial – entre 6% e 8%, ou 420 milhões a 560 milhões de pessoas. 95%
das doenças raras não possuem tratamento e dependem de uma rede de cuidados
paliativos que garantam ou melhorem a qualidade de vida dos pacientes",
diz o levantamento. No Brasil há estimados cerca de 13 milhões de pessoas com
doenças raras, número superior à população da cidade de São Paulo.



Os doentes afetados por estas doenças enfrentam
dificuldades semelhantes na sua procura por um diagnóstico, informação
relevante e orientação adequada para profissionais qualificados, e estão mais
vulneráveis do ponto de vista psicológico, social, econômico e cultural. Devido
à falta de conhecimentos científicos e médicos eficazes, muitos doentes não são
diagnosticados. As suas doenças permanecem por identificar. Estas pessoas são
as que têm mais dificuldades em receber apoio apropriado. 





FONTE:

http://www.bbc.com/portuguese/noticias/2013/03/130311_doencas_raras_pai.shtml

http://www.orpha.net/national/PT-PT/index/sobre-doen%C3%A7as-raras/

http://www.pfizer.com.br/noticias/Doencas-raras-quais-sao-e-porque-sao-chamadas-assim









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