Internationally there are many different ongoing initiatives to improve the knowledge about the current situation for adults with OI and their health related issues. Hopefully the knowledge that comes out of the various initiatives will end up in better treatment, follow-up and coordinated care for adults with OI. These are not OIFE projects, but our job is to collect and spread information about the initiatives and best practises.

International Adult Health Resource Group (Eric Orwoll and c/o)

Due to common interests in adults with OI, dr. Eric Orwoll identified researchers and clinicians who have worked on adult care. One of the clinicians who got involved was dr. Lars Folkestad from Denmark. During the summer of 2022 the group started meeting online to discuss a potential collaboration to identify the gaps in knowledge related to adult care.

The group consists of the Chair Eric Orwoll and members from the US, Laura Tosi, Cathleen Raggio, Sandesh Nagamani and from Europe, Lars Folkestad, Jannie Dahl Hald, Bente Langdahl, Stuart Ralston and Oliver Semler. The OI Foundation (OIF) is helping facilitate the meetings.

In the middle of January 2024 the group were gathered in Orlando, Florida to write what will be their 3rd paper together. The Delphi process study will review the current literature related to the risk of and follow up for cardiovascular disease in OI. The group had great discussions. OIFE was represented by Lars Folkestad and Oliver Semler (online).

Read an interview with dr. Eric Orwoll and dr. Lars Folkestad about the initiative from a previous magazine.

Adult Rare Bone Network & Adult Care Pathways in the UK

When adults with rare bone conditions turn 18 they mostly have no dedicated adult clinics or services to transition to. Because of an initiative from the BBS, there is now an official Rare disease collaborative network (RDCNs) established for adults with different rare bone conditions, including OI. The priority areas of existing RDCNs include: (across the UK)

  • Raising awareness of the rare disease
  • Improving co-ordination of care
  • Sharing of expertise and best practice
  • Establishing a disease registry to improve the understanding of the epidemiology of the rare disease
  • Research on treatment options and diagnostics
  • Establishing a support network for patients and families, including co-ordinated transition from paediatric to adult services.

In addition to delivering a virtual multidisciplinary structure for rare bone clinicians the network also has as its goal to develop care pathways (guidelines) for the different conditions, which will serve as resources for professionals and patients.

Read more about the UK initiatives in an interview with Patricia Osborne and Kassim Javiad elsewhere in the magazine.

Teams for adults with OI in Sweden

There are now 2 national teams for children with OI in Sweden and two national team for the assessment and follow up of adults with OI – one in Uppsala Academic Hospital and one in Linköping University Hospital.

According to the information at the Swedish health authorities, adults with newly diagnosed OI  should be assessed in adult National highly specialized unit (NHV) at least once. Adults with severe illness should be followed by an NHV team for adults. People with milder forms should be followed by an osteoporosis specialist at the local hospital and receive individual care plans from the adult NHV. The care plan includes follow-up with bone density measurements, dental care, hearing examinations among other topics. The intervals between follow-ups are determined by individual needs, the severity of the disease and the type of treatment.

Nordic collaboration - Checklist & Guidelines for follow-up of adults with OI.

The OI-professionals in the Nordic countries (including Iceland) are working to develop more common checklists and recommendations for regular follow up of children and adults with OI.

The Norwegian checklists for GPs and pediatricians are used as a point of discussion. It has now been published to English to make the collaboration easier. The list is made by the centre of expertise TRS kompetansesenter for sjeldne diagnoser.

Perhaps something other countries can benefit from as well?

Adult Health Toolkit from the USA

“The Adult Health Toolkit” is made by the OI Foundation in the US. It is Information for Adults Living with OI, Their Families, and Medical Professionals to help you navigate the many aspects of managing your health as an adult living with OI. Learn more and check out this resource in both English and Spanish language at

Adult Week-Ends

Several of our member organizations have started to organize gatherings for adults in addition to the more common family meetings. Such meeting can be a great place to get together and share experiences between people living with OI in addition to learning from professionals. This photo is from DOIG (German group) who got together last week-end in Kassel, Germany.

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