Study On Disstigmatized Of Rare Diseases Groups From The Perspective Of Macro Social Work

In recent years,especially after the "ALS Ice Bucket Challenge" in 2014,is a rare disease gradually entered the social public view,however,after reviewing the related social policy and the social survey,found that the social policy guarantee of rare diseases group is not perfect,even there is a stigma phenomenon;There are some cognitive biases in the public,mainly for the stereotypes,prejudice and discrimination and group classification effect with stigma tend,due to the particularity of rare diseases.Most of the public is unaware of the rare disease,disease difficult to cure and disabled features often make public subconsciously rejection,fear and stigma attitude;Mass media as a bridge of information transmission,in the process of rare diseases group stigmatized,the media often report negative and hunting news,It is not conducive to public understanding of rare diseases,even spread and curing the stigma of rare diseases group;Mostly diseases group can realize the influence of system stigma and social stigma,and gradually appear five trends:social withdrawal,alienation,stereotype endorsement,perceived discrimination and stigma resistance.low quality of life of rare diseases group,single way of life,Rare diseases patient often appear negative emotions and low self satisfaction,low participation in social life also make self stigma more worse.Patients with rare diseases face stigma and life difficulties,but is not caused by personal,rare diseases as well as a public health problem,but also social policy issues,the distigma of rare diseases group,We need cooperation from all sectors of society,the social public,the mass media,government and the community itself.Therefore,suggest to advocate the perspective of Macrosocial work: The government raised social security for the group,The media should strengthen common knowledge about rare diseases of the public,and we encourage rare patients to resist social stigma.Only by correcting the cognitive biases of the public and raising the stigma of the rare disease group can we create a harmonious social environment of freedom and equality and mutual respect among all groups of society.