We present a rare case of a 13-year-old male patient from Eastern European population with complaints of pain, discomfort, swelling, and bruising in the left shoulder. After low-dose computed tomography angiography, a giant, segmental, arteriovenous hemangioma was detected. Several hypotheses have been proposed for the pathogenesis of pediatric hemangiomas, but the exact etiology of these lesions remains unclear. It is widely believed that females in the Caucasian population are most affected. Hemangiomas are more likely to be associated with developmental abnormalities and have typical behavior over time with devolution stage. Although benign, hemangiomas can cause serious and permanent damage, especially those located in depth, near bones, joint spaces, or parenchymal organs. The challenge for clinicians is to identify which hemangiomas need vigilant monitoring and / or surgery. Read the whole article here.
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The evaluation will assess the effectiveness of the Directive’s goal: to facilitate EU citizens’ access to safe and high quality cross-border healthcare in another EU country. It will also assess to what extent the Directive has promoted patients’ rights and cross-border cooperation between Member States for the benefit of EU citizens, in particular for patients with rare and complex diseases. The evaluation will also determine how effective are the approaches carried out by the different EU countries ; what barriers patients are still facing when seeking planned healthcare across borders and the benefits provided by the European Reference Networks for the treatment and diagnosis of rare and complex diseases.
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2020 is over, but its consequences and effects will certainly continue for a long time. The COVID-19 pandemic is an unprecedented challenge for all societies and health systems. On the other hand, every crisis brings opportunities for rethinking, change and progress. Rare diseases and people affected in some way or working in this field are an excellent example of a society that has managed to come together and work together to overcome a particular problem. A direct comparison between COVID-19 and rare diseases is, of course, inapplicable and inappropriate. But in the end, the principles and values of universality, access to quality healthcare, justice and solidarity are generally valid and retain their fundamental function and paramount importance in every public health issue.
One of possibly the most important lessons of 2020 is the perceived role of communication and the sharing of knowledge and expertise in a virtual environment. This is not a new topic at all. Everyone so far has been actively communicating on the Internet, taking online training courses and attending virtual events. But the mass use and lack of an alternative other than online communication in 2020 is undoubtedly something new. Virtual communication cannot replace or fill the presonal one, but it definitely has its advantages and strengths. The Eleventh National Conference for Rare Diseases and Orphan Drugs clearly demonstrates some of them. Read the whole article here.
We would like to wish our friends and partners Merry Christmas and Happy New Year! Thank you for your cooperation in 2020! We hope all of us will have a safe and relaxing festive holiday. We look forward to seeing you in 2021!
At this link you can register for the event for free.
At this link you can register for the event for free.
At this link you can register for the event for free.
On 25 November, 2020 at 17:30 in hall Dunav of the Virtual Congress Venue, in a specialized webinar, Prof. Ivaylo Tarnev, Prof. Violeta Yotova and Mr. Vladimir Tomov will present a lecture about “Patients with rare diseases in Bulgaria during the COVID-19 pandemic”. The webinar is intended for medical professionals and aims to provide information on how to ensure and optimize therapy and access to it during a COVID-19 pandemic. What is the viewpoint of patients and their new challenges during the COVID-19 pandemic. How we could improve the process of diagnosing, monitoring and treating patients with rare diseases in Bulgaria during the COVID-19 pandemic will be also discussed.
At this link you can register for the event for free.