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 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.
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.
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.