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COVID-19 Pandemic and Rare Diseases
During the COVID-19 epidemic, which seriously affects our country too, individuals with chronic diseases are among the most vulnerable patient groups including those with rare diseases. Rare diseases, 80% of which have a genetic origin and 70% are childhood-onset, are chronic diseases with a lifelong course. Individuals with rare diseases are greatly affected during the pandemic due to interruptions in access to medications and/or to healthcare services.
Today, the COVID-19 pandemic is affecting the whole world. We as the TUSEB-TUHKE Orphanet-TR team, under the guidance of our Orphnet-TR National Advisory Board, present you the scientific information activities carried out by the relevant medical professional organizations who dealt with specific rare diseases via the links below:
- The guide on “COVID-19 Infection and Neuromuscular Diseases” have been prepared by professor Haluk Topaloglu MD, and it is available on the website of the Pediatric Neurology Association of Turkey.
http://cnd.org.tr/haber.php?id=103 - Moreover, a document titled 'COVID-19 and Neurological Diseases', recommended by the Child Neurology Association of Turkey and prepared by the European Pediatric Neurology Association (EPNS), contains an up-to-date information on the subject.
https://www.epns.info/information-about-covid-19-neurological-disorders/ - There is a document titled ‘COVID-19 Epidemic and Precautions for Neuromuscular Diseases: Opinions and Recommendations of the World Neuromuscular Diseases Society’ on the website of the Neuromuscular Diseases Research Association. https://www.kukas.info/tr/m/haber/covid-19-salgini-ve-neuromuscular-hastaliklar-ine-önlemler-dunya-neuromuscular-hastaliklar-cemiyeti
- An internet portal has been prepared by the Turkish Physical Medicine and Rehabilitation Association for the purpose of Online Presentations and Documents 'Informing on the COVID-19 Pandemic'. The portal is open to the access of all interested parties.
http://www.tftr.org.tr/covid19/
You can also access the informative video at the following address. (https://www.youtube.com/watch?v=izUSbeVsw7Q) - An information paper entitled 'Rare Diseases in the Pandemic' has been prepared by the Pediatric Genetic Diseases Association at the following web address.
https://www.cocukgenetik.com/pandemide-nadir-hastaliklar - 'COVID-19 Information Page' has been prepared by the Turkish Neurology Society. https://www.noroloji.org.tr/menu/158/covid-19-bilgi
Also, you can access the 'live broadcast on COVID-19 related topics' webinars prepared by the Turkish Neurology Society.
https://www.noroloji.org.tr/menu/163/webinar - A video about COVID-19 and Rare Diseases has been prepared by the National Society of Allergy and Clinical Immunology.
https://www.youtube.com/watch?v=Ron1GrqvYJ0 - Patients with rare diseases are considered in the risk group for COVID-19 due to the systems and organs that can be affected. In addition, patients with rare diseases are very likely to develop various complications if they contract COVID-19. Therefore, strict follow-up of preventive measures and treatment are important. The European Commission, at the meeting on March 23, 2020, decided to coordinate the measures taken and efforts against the coronavirus epidemic in Europe.
- Orphanet aggregates expert advice and services on COVID-19 and Rare Diseases in different languages, including those provided by European Reference Networks (ERNs). To contribute to the list, you can send an e-mail to media. (orphanet@inserm.fr)
- Click here for the information on the Orphanet website within the scope of COVID-19 and rare diseases.
http://international.orphanews.org/summary/editorial/nl/id-200327.html