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.

Time

Friday 9 June 09:00 – Saturday 10 June 2023 16:00

Place

Scandic Continental, Stockholm City Centre

Language

English

Programme

Provisional outline programme

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
Renata Hoes, France
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 (deadline 6 March).  Please see the abstracts section below for more information and a link to the submission form.

Confirmed speakers so far include:

  • Eva Åström (Stockholm, Sweden)
  • Sophie Barlow (London, UK)
  • Michael Bober (Wilmington, USA)
  • Alison Boyce (Bethesda, USA)
  • Karen Braitmayer (USA)
  • Jacqui Clinch (Bristol, UK)
  • Ruben Cortés Muñoz (Valencia, Spain)
  • Marie Fahlberg (FOPSverige)
  • Renata Hoes (France)
  • Kis Holm Laursen (Risskov, Denmark)
  • Alex Ireland (Manchester, UK
  • Richard Keen (London, UK)
  • Ariane Kwiet (Oslo, Norway)
  • 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 Stadval 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)
  • AnnBett Wulff Kirkebæk (Aarhus, Denmark)

Anyone interested in the topics is welcome to attend, including:

  • Healthcare professionals and researchers with an interest in OI 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 OI 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 draft 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

Submission deadline

Monday 6 March, 23:59 CET

We invite your abstracts and case studies on any aspect of pain in osteogenesis imperfecta, 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.
There will be time on the programme for short orals and poster viewing. Abstracts and case studies will be reviewed by the programme committee and the final decision on form of presentation will be based on the outcome of the review process.

Venue

Scandic Continental Capitol Terrace

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.

Scandic Continental Hotel

Vasagatan 22,
111 20 Stockholm,
Sweden

Registration and accommodation booking

Registration deadline

Early bird: February 1 midnight CET
Registration deadline: June 1

Conference fee

*Early bird fee is applicable until 31 January 23:59 CET

**Standard fee is applicable from 1 February until 1 June

Members of OI-organisations

people with OI, parents and staff members

  • Early bird fee*: €50
  • Standard fee**: €100

These prices also apply for necessary disability assistants who are attending the lunches and coffee breaks.

Researchers and clinicians/allied health professionals
  • Early bird fee*: €200
  • Standard fee**: €250
Industry representatives
  • Early bird fee*: €300
  • Standard fee**: €350

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 limited 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 before 31 January 23:59
*There are many other hotels within walking distance, but we don’t have negotiated rates in other hotels.

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 StockholmTaxi 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.

Contact

Please contact the organizers at stockholm23@oife.org

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