European solidarity is changing the face of rare diseases.
نویسنده
چکیده
Almost 1 year ago, a BBC fi lm about a teenager called Louisa Ball briefl y captured the imagination of the British public. Called The Real Sleeping Beauty, the fi lm told the story of Louisa and her family as they dealt with the consequences of Louisa’s Kleine-Levin syndrome: a vanishingly rare neurological disorder that causes prolonged episodes of sleep, lasting, in most cases, between 1 and 3 weeks. By focusing on the eff ect that the disorder had on one family, the fi lm makers were able to capture the sense of frustration and isolation caused by a disease about which so little is known that it is impossible to estimate just how rare it is, and, for a short time at least, raise its profi le. But equally, the understandable temptation to focus on the extraordinary stories of individual patients with specifi c rare diseases can obscure a wider truth: that although individuals with any particular rare neurological diseases are—to state the obvious—rare, patients with rare neurological diseases are in fact numerous if they are taken together. And there can be strength in numbers. The European Union defi nes a rare disease as one that aff ects no more than fi ve people in 10 000, although most rare diseases have a prevalence closer to the one in 10 000 mark. However, put all of the estimated 5000–8000 distinct rare diseases together, and between 6% and 8% of the population will experience a rare disease during their lifetime. “If you
منابع مشابه
The changing face of a rare disease: lymphangioleiomyomatosis.
Lymphangioleiomyomatosis is a rare disease characterised by cystic destruction of the lung, lymphatic abnormalities and abdominal tumours. It affects almost exclusively females and can occur sporadically or in patients with tuberous sclerosis complex. In the past decade remarkable progress has been made in understanding of the pathogenesis of this disease leading to a new therapeutic approach. ...
متن کاملChangimg face of central European aquaculture: sustainability issues
Pond aquaculture is the most significant fish production method in central Europe, approximately 70% of the total fish production is originated from traditional fish ponds in this region, which is a resource-saving, ecologically sustainable production method. However, the growth of this sector is not expected because of the low production capacity of valuable fish species and the relatively hig...
متن کاملInvestigating Factors Influencing Ethnic Solidarity among Young People in Azeri Areas of Khalkhal
The present study was conducted to investigate the factors influencing ethnic solidarity among young people (18-30 years) in the Azeri regions of Khalkhal. Theoretical framework was presented using the theories Emile Durkheim, Ted Robert Gurr, George Homans, Anthony Giddens and others. The research method was survey, face validity was used and reliability was obtained by Cronbach's alpha coeffi...
متن کاملA Theoretical Study of Solidarity in American Society: The Case of the “Ground Zero Mosque” Controversy
The paper uses the case study of the controversy regarding the construction of a mosque near the site of the 9/11 terrorist attacks in Manhattan, New York, to analyze the different theoretical approaches to the concept of solidarity. It is argued that the presence of affectional solidarity which is based on feelings of caring, friendship and love was very limited in the case under study. Instea...
متن کاملExplain the lived experiences of educators of learning disorder centers from the challenges of changing face-to-face education to virtual education during the outbreak of coronavirus
Background & Purpose: The aim of this study was to explain the lived experiences of educators of learning disorder centers from the challenges of changing face-to-face education to virtual education during the outbreak of Corona virus. Method: Participants in this study were learning disorder educators working in learning disorder centers in Tehran in the academic year 1401-1400. The instru...
متن کاملذخیره در منابع من
با ذخیره ی این منبع در منابع من، دسترسی به آن را برای استفاده های بعدی آسان تر کنید
برای دانلود متن کامل این مقاله و بیش از 32 میلیون مقاله دیگر ابتدا ثبت نام کنید
ثبت ناماگر عضو سایت هستید لطفا وارد حساب کاربری خود شوید
ورودعنوان ژورنال:
- The Lancet. Neurology
دوره 11 1 شماره
صفحات -
تاریخ انتشار 2012