ADVOCACY

SURVEY ON COVID-19 & RARE DISEASES

Are you affected by a rare disease or a caring for someone affected by a rare disease? Then we strongly encourage you to share your experience on how the #COVID19 pandemic is having an impact on your life by completing this survey.

The survey is developed by the rare disease umbrella EURORDIS – European Rare Diseases Organisation and is available in 23 languages and open to rare disease patients, family members and carers around the world.

The main objectives of the survey are:
– Evaluate the impact of COVID-19 on rare disease patients’ medical care, social care and well-being.
– Identify measures and facilities that are helping rare disease patients to cope with the pandemic
– Identify aspects that may have a negative impact on rare disease patients care and well-being
– Identify potential long-term consequences of the pandemic

If enough people with OI answers worldwide – the OIFE can get useful data on consequences for people with OI specifically, which we can use in our policy work.

 

 

 

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MEDICAL

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.

See also “A message from the OI Foundation about Coronavirus”.

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 

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.

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.

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

If you are in doubt with what you should do in the current situation – please contact the health care providers in your country!

 

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