EVENTS

OIFE YOUTH EVENT CANCELLED

Perhaps not a big surprise, but the OIFE Executive Committee has in collaboration with the local organizers decided to cancel the OIFE Youth Event 2020 that was supposed to take place end of August, because of the Corona virus situation. Our plan is to do the OIFE Youth Event in Poland i 2021 and in Belgium in 2022. We will keep you updated!

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EVENTS

OIFE AGM on Zoom – a success

Each year all delegates are invited to the Annual General Meeting (AGM) of OIFE, which is normally the only time a year the whole Board comes together. At the AGM the Executive Committee (EC) accounts for OIFE’s activities in the past year, future plans and policies are discussed and members exchange news and ideas.

Our original plan for OIFE AGM 2020 was to meet in sunny Valencia from May 8th to May 10th. But the Corona virus put a stop to that, as it has done to so many other meetings and conferences. But we would not let it stop us from having our annual meeting. The EC therefore organized a two part meeting on Zoom on May 9th instead. Part one included approval of annual reports, budget and elections. And part two included a webinar on new treatments in OI.

Participants at OIFE AGM part 1 (participants of OIFE AGM part 2 in heading)

People from all continents took part

Anyone from our member organizations can attend the OIFE AGM. In addition, OIFE volunteers, volunteers from other organizations, professionals and other people with an interest in OIFE can be invited.

62 participants attended part one of AGM 2020. 66 people attended the webinar (part 2) on new treatments. What was unique about this year’s event, was the record number of member organizations that were able to attend. We had all the national organizations from Europe except one attending. In addition to European organization and three supporting members, we had representatives from organizations and invited guests from all different continents including Peru, USA, Chile, Ghana, Nigeria, India and Australia. This year we had also invited people from Mereo Biopharma, our Medical Advisory Board as well as contributors from other rare bone communities, including XLH and HPP. Between 70-75 people attended the event in total

Bruno elected as 2nd Vice President

Bruno Van Dijck

AGM part one included approval of annual reports, budget and elections. All proposals from OIFE EC were approved. We welcome Bruno van Dijck to the EC team, as the new 2nd Vice President of OIFE.

In addition to reports and elections, OIFE president and OIFE’s Communication Manager gave an update on current happenings and news and a summary from the national reports. The last part of OIFE AGM part one was dedicated to a presentation of a new collaboration on a planned global survey between OIFE, the OI Foundation and the company Mereo Biopharma.

Survey on the impact of OI

OIFE president presented the project, which is an initiative from Mereo Biopharma which is formally supported by OIFE and the OI Foundation. The plan is to do a global survey on the impact on OI to:

  • understand the patient journey better in X & Y country
  • to understand better what OI means for children and adults beyond fractures
  • what the economic impact of OI is on people with OI and their families (direct and indirect costs)
  • how we can measure quality of life in OI in the best possible way
  • what kind of data we should collect and how

Three representatives from Mereo Biopharma were present to answer questions and comments from the participants. Mereo informed us that a steering committee will be established with members from OIFE, OIF and Mereo Biopharma in addition to 5 medical professionals from US and Europe, including both pediatricians and adult doctors.

Webinar on new treatments in OI 

Part two took place on Zoom from 15.00 to 17.00 and included talks about:
– News on BOOSTB4 (Cecilia Götherström)
– News on setrusumab project (Mereo Biopharma)
– Access to treatments for rare bone diseases (Oliver Gardiner & Paul Connor)
– Registries & patient data (Lena Lande Wekre)
Click here to download the agenda.

 

OIFE AGM on Zoom a success 

The event has received a lot of positive feedback in retrospect and many people were positively surprised how well an event on Zoom could work. 37 people answered the evaluation form and 95% of the participants gave a score of “Very good” or “Excellent”, which means that OIFE AGM 2020 can be considered a success.

 

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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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