COVID-19 – info for people with OI
The OIFE will update this page with links to resources about COVID-19 and osteogenesis imperfecta. We have created a shortlink to this page to make it easier to remember. If you type in the following in your browser, you will be redirected to this page oife.org/covid19
Are people with OI in the risk group?
We have received some questions if people with OI are in the risk group regarding the Corona virus (COVID-19). OI does not affect the immune system as such! However lung connective tissue is altered in all types of OI. The severity of symptoms and the risk for pulmonary problems is increased in people with short stature, abnormal chest shape, kyphoscoliosis, and vertebral or rib fractures.
In some countries they have specifically put osteogenesis imperfecta on the official list of “at-risk patients”. See the “Clinical guide for the management of rheumatology patients during the coronavirus pandemic” as an example from the UK.
Resources on pulmonary issues & OI
Fact sheets from the OI Foundation about:
– Respiratory issues: https://bit.ly/2ItnPx
– Adults with OI & breathing issues: https://bit.ly/2TLc1eB
– Pneumonia vaccine for people with OI (new update from April 2020): https://bit.ly/3aBJmzm
General emergency information for people with OI
- Emergency Room Care – Pocket Guide for People with OI
- OIFE passport – emergency situation information in 24 languages (download PDFs for free)
- Anesthesia & intubation recommendations in OI (Orphanet September 2012)
Official sources of information about COVID-19
With the fast-evolving situation surrounding COVID-19 in Europe and across the world, members of the rare disease community may be concerned about their health. Please find below links to official information sources that are updated regularly. We also advise that you refer to information published by your own national health authorities/ ministries.
- World Health Organization
- European Centre for Disease Control
- National information resources for the public on COVID-19
- US Centers for Disease Control and Prevention
- EMA – Guidance on the Management of Clinical Trials during the COVID-19 (Coronavirus) pandemic
ERN-BOND COVID-19 Helpline
ERN BOND – European Reference Network on Rare Bone Diseases has created a 24-hour Help Line for COVID-19. The purpose behind it is to give advice in cases where a person with a rare bone disease (incl. OI) has contracted COVID-19 or there is a strong suspicion that they have it.
The Help Line was created in agreement with the rare disease umbrella in Italy Federazione delle Associazioni di Persone con Malattie Rare d’Italia (UNIAMO FIRM) and with the Asitoi – Associazione Italiana Osteogenesi Imperfetta Onlus.
You can contact the Help Line by calling or sending a whatsapp message to the number: (+39) 331 1728796
For now, the network is primarily for Italy (the country in which the emergency is most acute), but ERN BOND is encouraging similar helplines in other countries. An article about the Helpline called “Providing high-quality care remotely to patients with rare bone diseases during COVID-19 pandemic” has been published in Orphanet Journal.
Webinars on COVID-19 & OI on YouTube
There has been several webinars on COVID-19 & OI in the past weeks and months. We bring you the links to the English language
- Q&A webinar with Dr. Robert Sandhaus (pulmonologist) and Dr. Francis Glorieux organized by the OI Foundation March 2020
- Q&A webinar with Dr. Robert Sandhaus and Dr. Sandeesh Nagamani organized by the OI Foundation in May 2020 – featured below
- Q&A webinar with MAB-members of the Brittle Bone Society (May 2020)
- Webinar with MAB-members of the Brittle Bone Society (April 2020)
- Webinar on Covid19 and care for rare bone diseases organized by ERN BOND and EU Commission
If you are in doubt with what you should do in the current situation – please contact the health care providers in your country!