Compared with other common diseases in the general population, a rare disease is a health condition that affects a small number of people. The progressive, life-threatening and multi-dimensional nature of these diseases requires the development of an effective health policy. The aim of this study is to examine health policy for rare diseases from a historical point of view in Turkey. Public Health Law No. 1593 provides the basis for policies developed in the field of rare diseases. In the early 2000s, genetic screening programs have been launched (neonatal metabolic and endocrine disease, inherited blood diseases, biotinidase deficiency, phenylketonuria, congenital hypothyroidism, adrenal hyperplasia, cystic fibrosis, etc.). Since 2007, Turkey has been a member of Orphanet. The Draft Guide to Orphan Drugs was published by the Ministry of Health in 2009. Since 2014, the public authorities, universities and NGOs have been particularly interested in rare diseases. The civil society initiative 'Rare Diseases Network' was established in 2018 under the leadership of patients and their families. Some reports on rare diseases were published by TÜHKE and the TAÇESE in 2019. The Parliamentary Investigation Commission has been set up to determine the situation of some rare diseases. The Rare Diseases Department was established within the Ministry of Health in 2020. It is recommended that the National Action Plan on Rare Diseases and Orphan Drugs should be implemented to develop policies, in particular access to healthcare services and provide economic and psychosocial support.
Aim/Background: Marital satisfaction can be defined as the attitude an individual has toward his or her own marital relationship. Crises may affect marital satisfaction and one of the factors causing the crisis is diseases. The aim of the study is to examine the marital satisfaction of couples with Behcet and Familial Mediterranean Fever. Method: The research is a cross-sectional field study in the screening model. Participants consisted of 68 couples diagnosed with Behcet and Family Mediterranean Fever Disease. Golombok-Rust Marriage Status Inventory was used with the questionnaire to collect data. In the first part of the questionnaire, the sociodemographic characteristics and the information about the disease were asked. In the second part, there are 13 questions that can be answered in a triple Likert type to determine the changes in family and social relationships after the diagnosis. Data were obtained between February 1, 2017 and June 1, 2017 and analyzed via SPSS 22. Results: All of the participants were married with official marriage, 69.1% (n=94) were willingly married and 89.7% (n=61) had children. 33.1% of the participants have Family Mediterranean Fever and 16.9% have Behcet Disease. With the diseases; 13.2% of the participants (n=18) were less likely to share important issues with family members, 12.5% (n=17) who reported degrading behavior to family members, 17.6% reported that family members were less likely to support each other, 18.4% (n=25) stated that the displeasure among the family members increased. 13.2% said that they share less important issues with their family members, 12.5% have a negative attitude towards family members, and 17.6% said that family members have less support, 18.4% of the family members increased their frustration and 59.6% of them had a lower frequency of sexual intercourse. Participants in the inventory scores, 4.4% were undefined, 14% were very good and 11% were good; 6.6% were above average, 20.6% were mediocre and 8.1% were in weak point range. Conclusion: Behcet and Family Mediterranean Fever diseases affect marital satisfaction and it is recommended that families with these diseases may have family counseling, psychoeducation and sexual counseling services.
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