Lack of understanding and poor management of pain severely impacts the quality of life of children and adults with osteogenesis imperfecta (OI).
Under the title “Balancing life with OI” we are organising a topical meeting on the neglected subject of the causes, assessment and management of pain in OI and its impact on physical and mental health, sleep, fatigue, mobility, relationships/families and work/life balance.
The event takes place at the Scandic Continental Hotel in Stockholm, Sweden, on 9-10 June 2023.
This topical meeting will offer the opportunity to present and discuss current research, treatment methods and other updates on OI-related pain. The meeting format will comprise a mix of longer talks from invited speakers, shorter talks based on submitted abstracts, workshops, panel discussions and poster presentations. Parts of the programme will be relevant for people working with other rare bone diseases.
The conference is organised by OIFE in collaboration with the Swedish OI-organisation, SFOI. The OIFE Medical Advisory Board and our international resource group on pain and OI are also involved in the planning process.
Organisers
Programme committee
Eva Åström, Sweden
Darko Anticevic, Croatia
Marelise Eekhoff, The Netherlands
Lena Lande Wekre, Norway (Conference Chair)
Dace Liepina, Latvia
Dimitra Micha, The Netherlands
Ruben Muñoz, Spain
Miguel Rodríguez, Spain
Lidiia Zhytnik, Estonia
Organising committee
Karen Braitmayer, USA
Stephanie Clayes, Belgium
Janet Crompton, UK
Coreen Kelday, UK
Anna Rossi, Italy
Malene Sillas, Denmark
Inger-Margrethe Stavdal Paulsen, Norway
Bruno Van Dijck, Belgium
Louise Vidlund, Sweden
Ingunn Westerheim, Norway (Organising Committee Chair)
Jacob Ø Wittorff, Denmark
Programme
The conference programme includes research, case studies regarding the causes, assessment and management of pain in osteogenesis imperfecta and its impact on physical and mental health, sleep, fatigue, mobility, relationships/families and work/life balance. Comparisons with other rare bone disease will also be made.
To make sure the perspective of the people with OI and other rare bone diseases are covered, we will also include anonymous testimonies, to shed a light on some of the challenges.
We encourage your research abstracts and case studies. Please see the abstracts section below for more information and a link to the submission form.
Speakers include:
- Eva Åström (Stockholm, Sweden)
- Sophie Barlow (London, UK)
- Michael Bober (Wilmington, USA)
- Alison Boyce (Bethesda, USA)
- Karen Braitmayer (USA)
- Jacqui Clinch (Bristol, UK)
- Meryl Chambers (Soft Bones HPP UK Foundation)
- Ruben Cortés Muñoz (Valencia, Spain)
- Marie Coussens (Ghent, Belgium)
- Marie Fahlberg (FOPSverige)
- Kis Holm Laursen (Risskov, Denmark)
- Alex Ireland (Manchester, UK
- Richard Keen (London, UK)
- Ariane Kwiet (Oslo, Norway)
- Liana la Forgia (Italian Patient Association on Multiple Osteochodromas)
- Lena Wekre Lande (Oslo, Norway)
- Fransiska Malfait (Ghent, Belgium)
- Cathy Raggio (New York, USA)
- Miguel Rodrígues Molina (Madrid, Spain)
- Mercedes Rodriguez Celin (Chicago, USA)
- Inger-Margrethe Stavdal Paulsen (NFOI)
- Rebecca Skarberg (OIFE)
- Michael Stewart (OIF)
- Audun Stubhaug (Oslo, Norway)
- Kelly Thorstad (Montreal, Canada)
- Tenna Toft (XLH Alliance)
- Ingunn Westerheim (OIFE)
- Andrew Wiese (Houston, USA)
- Jacob Wittorff (Denmark)
- AnnBett Wulff Kirkebæk (Aarhus, Denmark)
Anyone interested in the topics is welcome to attend, including:
- Healthcare professionals and researchers with an interest in osteogenesis imperfecta in general
- Healthcare professionals and researchers with an interest in pain, fatigue, sleep and mobility etc
- OI community (people with OI, family members, staff and volunteers)
- Professionals and people connected to other rare bone diseases
- Industry representatives
Associated meetings
The following meetings will take place in parallel from Saturday 10 June 16:30 – Sunday June 11 13:00:
OIFE’s Annual General Meeting (separate ticket of €60/30)
Anyone from our member organizations can attend the OIFE AGM. In addition, OIFE volunteers, professionals and other people with an interest in OIFE can be invited.
Ticket to the OIFE AGM include the meeting + dinner on Saturday and grab and go lunch on Sunday. Tickets can be bought through Eventbrite.
SFOI Membership Meeting.
This meeting is for people with osteogenesis imperfecta and parents of OI-children. There is a separate ticket of €50 for paying members of SFOI. Central Swedish professionals may ask to be invited to the lectures.
Saturday (16.30 – 19.00) will offer lectures from professionals and parents of children with OI. Sunday morning (10.00 – 13.00) will offer peer groups and a meeting to discuss the future of the Swedish OI-organisation.
Download the invitation and updated programme here.
Ticket to the SFOI-meeting include the meeting + dinner on Saturday and grab and go lunch on Sunday. Tickets can be bought through Eventbrite.
Abstracts and case study submissions
Although the original deadline for abstract submissions has now passed, we are happy to consider late abstracts for presentation at the meeting and the abstract submission form will remain open. In case you would like to make a submission, please email us at abstracts@oife.org as soon as possible to let us know the topic area and an idea of when you would be able to submit the work.
We invite your abstracts/case studies on any aspect of osteogenesis imperfecta where pain can be an issue, including causes, assessment and management of pain in OI, and its impact on physical and mental health, sleep, fatigue, mobility, relationships/families and work/life balance. Relevant work from other rare bone disease areas is also welcome.
As well as research abstracts please also think about sharing clinical care initiatives and other successes (and failures), including practical interventions, education and service delivery – the more we can learn from each other the better.
Abstracts will not be formally published and work which has previously been presented or published may be submitted for consideration.
A message from Lena Lande Wekre, Conference Chair and Senior Consultant at Sunnaas Rehabilitation Hospital, Oslo, Norway:
“OIFE’s next topical meeting is about how living with pain can affect all parts of life. And equally important – how do different aspects of life (and the diagnoses) lead to pain? In order to find the right balance, and the right solutions, we must work together and share our knowledge and experiences – professionals, researchers, industry and everyone who has, or lives with someone who has, osteogenesis imperfecta. I therefore encourage all of you to send us an abstract about new (and perhaps old?) solutions, treatment, aetiology, case studies (showing both good and challenging results), impact on work etc. The conference will be even more exciting if we share what we know – and what we don’t know. I am curious to hear from you.”
Venue
Scandic Continental enjoys a fantastic location in Stockholm city centre. Close to shopping areas, culture, attractions and restaurants. Popular attractions such as the Old Town, the Opera, City Hall and Royal Palace are all close by. From the accessible rooftop terrace you have a view to the city.
The hotel has excellent wheelchair access, with 45 adapted rooms. Some of the rooms have adjustable beds (electrical).
The hotel is only a 100 metre walk (flat) from the wheelchair accessible Airport Express from Arlanda Airport.
Registration and accommodation booking
Conference fee
Members of OI-organisations
people with OI, parents and staff members
- Conference fee: €100
This price also apply for necessary disability assistants who are attending the lunches and coffee breaks.
Researchers and clinicians/allied health professionals
- Conference fee: €250
Industry representatives
- Conference fee: €400
Included in the registration fee (participants)
- Attendance at all scientific sessions, poster sessions and workshops
- Coffee and refreshment breaks Friday and Saturday
- Lunch Friday and Saturday
Conference dinner
The fee for conference dinner Friday costs €35. You must book this ticket separately in Eventbrite!
Accommodation fees
A number of rooms in the Scandic Continental* from Thursday to Monday have been reserved for conference participants at pre-negotiated rates:
- €155 per night (single room) incl. breakfast for 1 person
- €175 per night (double room) incl. breakfast for 2 people
To get the pre-negotiated rate – participants must book and pre-pay accommodation through our registration link (separate “tickets”)
*There are many other hotels within walking distance, but we don’t have negotiated rates in other hotels.
NOTE! Accommodation scam alert
Some of the participants have been contacted by external companies offering help with the booking of accommodation for this conference. This is a scam! Accommodation at Scandic Continental for this event can only be booked through our Eventbrite registration.
Cancellation policy
- There will be no refunds for cancellations although substitutions may be made until 1 June 2023 – please contact office@oife.org
- The organisers are not responsible for any cancellation or change fees from hotels, airlines, transportation providers, visa providers or travel agencies.
Travel
Stockholm Arlanda international airport has direct flights to many different cities in Europe and worldwide. It is also possible to get to Stockholm by ferries from Helsinki (wheelchair accessible) and bus/train from Copenhagen or Oslo.
From the airport
Arlanda Express
With the wheelchair accessible Arlanda Express train it takes 18 minutes from Arlanda Airport to the city centre. In the middle of every train is a special area for wheelchairs and electric wheelchairs. There is no step or no gap to enter. They also have spacious wheelchair friendly WC onboard. If you have a disability, you may be accompanied by an assistant at no extra charge. At Arlanda Airport, you can take a lift directly between the platforms and the terminals. It is possible to book assistance if you need help with luggage. More details about accessibility can be found here.
Taxi*
Taxi services are available at Stockholm Arlanda Airport and Bromma Airport. Travel time from Stockholm Arlanda Airport: app 40 minutes, depending on the time of day. From Bromma Airport: approximately 15 minutes, depending on the time of day. Credit cards are readily accepted.
Please note: Taxi fares in Sweden aren’t regulated, which means that prices can vary significantly between companies. With this in mind, we recommend that you use the services of well-known firms like Taxi Stockholm, Taxi 020 and Taxi Kurir.
*Wheelchair accessible taxis must be prebooked and can be very expensive.
For other ways to get from/to Arlanda Airport – please refer to this page.
Supporters
At the moment we are not planning to have exhibits or sponsor packages. Our goal is to finance the conference with educational grants from industry and other sources. But feel free to reach out to us if you are interested in collaborating with us.
FAQ
You can buy accommodation in addition to tickets in Eventbrite.
No, the abstracts will only be published in the downloadable abstract book (PDF), that the participants will get access to.
We are trying to raise enough funds to be able to cover professional streaming of the conference.
Unfortunately, no that we know of.
No, the concept of the conference, do not allow us to sell day-tickets.
Acknowledgement
This Networking event has received funding from the European Union’s Horizon 2020 research and innovation programme under the EJP RD COFUND-EJP N° 825575
