Description
The disadvantaged position of people living with rare diseases is not only compared to the society, also compared to people with common diseases. Because of the lack of information there is no medication, no treatment for these patients and the health care system does not support them. They can not get a job and they live isolated from the society. Most of them are mentally disabled and also due to guardianship they could be more easily emotional, mental and sexual abuse victims. Our aim is to communicate our message that help is available, we want to suggest that they should not feel shame because of their diseases and they should dare to ask help. We want to show them that they have fellow sufferers and they can be stronger together. Rising the attention of the intact society we want to start dialogue, involved decision-makers, leaders of pharmaceutical companies. After the campaign we are going to organize a conference and we will invite the competent ministries of the government, foreign and hungarian experts to discuss the further steps. The primary target group is people living with rare disease who do not dare to ask help, as well as those who have lack of information about their illness and running up and down from doctors to doctors without. The size of this group is about 6-8% of the population of Hungary (600 thousand people). The indirect target group is the young adults who are before having children, because it is relevant for them to know about rare diseases.
Summary of project results
The Hungarian Federation of People with Rare and Congenital Diseases (HUFERDIS) organised a fashion show to raise awareness for rare diseases on 10 March 2016. The slogan of the campaign was „Tolerance suits you well!”. There is not enough medication and treatment for rare disease patients, because of the lack of information and the health care system of Hungary does not support them sufficiently. HUFERDIS’s aim was to communicate that help is available for these people, and wanted to suggest that they should not feel shame because of their diseases. The campaign caused a remarkable media wave. The biggest TV channels of Hungary was present at the fashion show and the campaign itself reached out to more than 250.000 people. Besides the unexpected number of reached people, the traffic of HUFERDIS’ helpline centre increased, compared to the previous period. To learn more about the campaign please check out the video of the fashion show:
https://www.youtube.com/watch?v=uxFWUIFXIAY
Summary of bilateral results