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.

If you have any suggestion please contact us.

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


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




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)



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



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



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


United States 

Issued by health experts
COVID-19 and Individuals with Dwarfism




Indications from federations/organisations and scientific societies