Practical management of epidermolysis bullosa: consensus clinical position statement from the European Reference Network for Rare Skin Diseases

2021 ◽  
Author(s):  
C. Has ◽  
M. El Hachem ◽  
H. Bučková ◽  
P. Fischer ◽  
M. Friedová ◽  
...  
Keyword(s):  
Epidermolysis Bullosa ◽  
Skin Diseases ◽  
Position Statement ◽  
Reference Network ◽  
European Reference Network ◽  
Practical Management

scholarly journals Emergency management in epidermolysis bullosa: consensus clinical recommendations from the European reference network for rare skin diseases

2020 ◽  
Vol 15 (1) ◽  
Author(s):  
Jemima E. Mellerio ◽  
Maya El Hachem ◽  
Nathalia Bellon ◽  
Giovanna Zambruno ◽  
Hana Buckova ◽  
...  
Keyword(s):  
Emergency Management ◽  
Epidermolysis Bullosa ◽  
Skin Diseases ◽  
Reference Network ◽  
Clinical Recommendations ◽  
European Reference Network

scholarly journals Cross-infection risk in patients with bronchiectasis: a position statement from the European Bronchiectasis Network (EMBARC), EMBARC/ELF patient advisory group and European Reference Network (ERN-Lung) Bronchiectasis Network

2018 ◽  
Vol 51 (1) ◽  
pp. 1701937 ◽  
Author(s):  
James D. Chalmers ◽  
Felix C. Ringshausen ◽  
Bridget Harris ◽  
J. Stuart Elborn ◽  
Annette Posthumus ◽  
...  
Keyword(s):  
Position Statement ◽  
Infection Risk ◽  
Cross Infection ◽  
Reference Network ◽  
Advisory Group ◽  
European Reference Network

scholarly journals Epidermolysis bullosa House Austria as a role model for the care of a rare disease

2019 ◽  
Vol 47 (1) ◽  
pp. 2-11
Author(s):  
C. M. Prodinger ◽  
M. Laimer ◽  
J. Bauer ◽  
H. Hintner
Keyword(s):  
Epidermolysis Bullosa ◽  
Skin Disease ◽  
Role Model ◽  
Reference Network ◽  
Special Focus ◽  
Patient Centered ◽  
Successful Model ◽  
Outpatient Unit ◽  
European Reference Network ◽  
History Of

The evolution of the Epidermolysis bullosa (EB) House Austria in Salzburg has demonstrated from its beginning in 2005 in an exceptional way the establishment of an optimized health care for a hitherto neglected group of patients, suffering from a rare but devastating skin disease: Epidermolysis bullosa. Patients with this hereditary mechanobullous skin disease, characterized by a heterogenous clinical course, multisystemic manifestations and increased morbidity and mortality, find in the EB House Austria a multidisciplinary, medical and psychosocial, family-centered support, optimally customized to this condition and individualized to each patient. Its unique structure of four divisions (Outpatient Unit, Research Laboratory, Academy, Clinical Research and Study Center) has set the basis for the delivery of best medical practice and state-of-the-art care as well as the establishment/ performance of high quality and patient centered research and translational medicine. Initially the (ongoing) close collaboration with the powerful patient group and medical research charity “DEBRA Austria” that is dedicated to a multidimensional support of EB patients and their relatives living in Austria and neighboring countries, has enabled the construction of the EB House Austria. The acknowledgement of this institution as a successful model has been officially obtained in 2017 by its designation as a national Center of Expertise for Genodermatoses with special focus on EB and its inclusion into the European Reference Network (ERN) for Rare Skin Disorders in September 2018. Therefore, the history of the EB house is worth reviewing since it can be regarded as a role model for the care of other rare and multisystemic diseases.

scholarly journals Position statement on access to care in rare liver diseases: advancements of the European reference network (ERN) RARE-LIVER

2019 ◽  
Vol 14 (1) ◽  
Author(s):  
Lucas H. P. Bernts ◽  
David E. J. Jones ◽  
Marleen M. Kaatee ◽  
Ansgar W. Lohse ◽  
Christoph Schramm ◽  
...  
Keyword(s):  
Access To Care ◽  
Liver Diseases ◽  
Position Statement ◽  
Reference Network ◽  
European Reference Network

Mosaic abnormalities of the skin: review and guidelines from the European Reference Network for rare skin diseases

2019 ◽  
Vol 182 (3) ◽  
pp. 552-563 ◽  
Author(s):  
V.A. Kinsler ◽  
O. Boccara ◽  
S. Fraitag ◽  
A. Torrelo ◽  
P. Vabres ◽  
...  
Keyword(s):  
Skin Diseases ◽  
Reference Network ◽  
European Reference Network

scholarly journals Educational aspects of rare and orphan lung diseases

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Tiago M. Alfaro ◽  
Marlies S. Wijsenbeek ◽  
Pippa Powell ◽  
Daiana Stolz ◽  
John R. Hurst ◽  
...  
Keyword(s):  
Lung Diseases ◽  
Healthcare Professionals ◽  
Treatment Options ◽  
Delayed Diagnosis ◽  
Reference Network ◽  
Delay In Diagnosis ◽  
Positive Effects ◽  
European Reference Network ◽  
Patient Representatives ◽  
Rare Lung Diseases

AbstractPeople with rare lung diseases often suffer the burden of delayed diagnosis, limited treatment options, and difficulties in finding expert physicians. One of the reasons for the delay in diagnosis is the limited training for healthcare practitioners on rare diseases. This review explores the main concerns and needs for education on rare lung diseases from the perspectives of both patients and professionals. Despite the increasing interest in rare lung disorders and some recent breakthrough developments on the management of several diseases, healthcare professionals, including general practitioners and hospital workers, receive little education on this topic. Nonetheless, many healthcare professionals show much interest in receiving further training, especially on diagnosis. Patients and families want easier access to high-quality education materials to help them manage their own disease. Well-educated patients are better equipped to deal with chronic diseases, but patient education can be challenging as patients’ individual health issues, and diverse backgrounds can create significant barriers. Raising more awareness for rare lung diseases and further development of patient-centred international expert networks like the European Reference Network on Rare Lung Diseases (ERN-LUNG), which includes both experts and patient representatives, are essential for improving care and education on rare lung diseases. Initiatives such as the Rare Disease Day, have been successful in increasing awareness for rare conditions. The development of online tools for accessing information has had positive effects and should be further supported and extended in the future.

scholarly journals A survey of the European Reference Network EpiCARE on clinical practice for selected rare epilepsies

2020 ◽  
Author(s):  
Tobias Baumgartner ◽  
Mar Carreño ◽  
Rodrigo Rocamora ◽  
Francesca Bisulli ◽  
Antonella Boni ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Reference Network ◽  
European Reference Network
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