COVID-19 indications and recommendations

This section is created with the final goal to provide an immediate support to rare disease patients affected (or suspected) by COVID-19 infection and to clinicians who are treating them. Here, COVID-19 indications and recommendations concerning the treatment of these patients are collected to provide advice to interested patients and clinicians. Some documents are available only in the original language. Please be aware that this section is constantly updated with new contents and information.

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European Reference Networks

Issued by European Reference Networks
ERN recommendations on COVID-19 vaccination for patients with rare diseases
ERN coordinators together issued some recommendations on the COVID-19 vaccination program by listing priorities and contraindications for patients with a rare disease within their respective network for people with rare diseases

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Austria

Issued by health institutions
COVID-19: Information for patients, parents and guardians

Issued by Orphanet Austria
Information for people with rare diseases: Informationen für Patient/Innen Mit Seltenen Erkrankungen Bezüglich Corona-Virus

France

Issued by health national authorities
– Patients with Hypophosphatasia: Adultes et enfants atteints d’hypophosphatasie (HPP)
– Patients with Fibrodysplasia Ossificans Progressiva: Adultes et enfants atteints de fibrodysplasie ossifiante progressive (FOP)
– Patients with Ehlers-Danlos syndrome: Adultes et enfants atteints des syndromes d’Ehlers-danlos non vasculaires (SED NV)

Germany

Issued by scientific societies:
– Indications for bisphosphonates: Intravenöse Bisphosphonate und Corona-Virus

Issued by patient organisations:
– Indications for OI patients: Notfall-Handlungsempfehlung Für Die Gesundheitliche Versorgung Von Menschen Mit OI Und Covid19

Italy

Issued by patient organisations
Children and disabilities: Documento su coronavirus e bambini con disabilità 

Issued by health experts
Distress factors: Scudo per distress psichico da COVID-19

Portugal

Issued by patient organisations
Patients with bone dysplasias: Boletim para Pessoas com Displasias Ósseas e famílias

The Netherlands

Issued by patient organisations
Fibrous Dysplasia and COVID-19: Fibreuze Dysplasie en het coronavirus

United Kingdom

Issued by health authorities
Clinical guide for the management of rheumatology patients during the coronavirus pandemic

Issued by health organisations
COVID-19 update for people with rare bone disorders
Advice-for-people-with-hypoparathyroidism 

United States 

Issued by health experts
COVID-19 and Individuals with Dwarfism

Indications from federations/organisations and scientific societies


– OIFE (oife.org): COVID-19 and info for people with OI
– Brittle Bone Society (brittlebone.org): Update On Covid19 From Brittle Bone Society Medical Advisory Board
– Orphanet portal – available in 7 languages (orpha.net): Emergency guidelines for rare diseases in general
– Care4BrittleBones foundation (care4brittlebones.org): Information for people with OI
– EURORDIS (eurordis.org): COVID-19 Information Resource Centre
– International FOP Association (iccfop.org): Coronavirus (COVID-19) Precautions for FOP Families
– International Osteoporosis Foundation (iofbonehealth.org): COVID-19 and osteoporosis