Message from the President of IOF

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As the Board term 2016-2020 draws to an end, IOF President Cyrus Cooper reviews the achievements of IOF over the course of the past four years.

Dear Colleagues,

In anticipation of the upcoming Board elections, I’d like to take this opportunity to thank you all for your support and to review IOF’s many accomplishments since the start of my tenure as President in March 2017.

Being at the helm of IOF has been an incredible honor and important responsibility. I am proud of the achievements which have been made in this short time, and I hope that I will have the privilege of continuing my role as President in the coming term.

In 2017 my first priority was clearly to realign the Foundation, which was recovering from a substantial deficit, and to put in place the necessary organizational, financial and operational changes that would ensure IOF’s long-term sustainability. I’m pleased to say that this has been accomplished. As a result, we now have a stronger, leaner Foundation which continues to thrive on a stable financial footing.

Powerful public awareness and operational advocacy initiatives

A key focus of the new organizational strategy has been to focus communications on changing the global perception of osteoporosis, by highlighting the burden of disease, and by integrating the patient experience and voice within our programmes and messaging. This focus has been reflected in several powerful public awareness and operational advocacy programmes carried out over the past two years. The annual World Osteoporosis Day (WOD) annual campaign has grown immensely in impact and outreach. To date, a record 260 events have been held for 2019, with all signs pointing to unprecedented outreach via social media and press this year. The IOF Global Patient Charter, launched in cooperation with CNS patient societies, has been endorsed by 97 organizations so far and continues to drive awareness of patient rights to timely diagnosis and treatment. IOF’s ‘Patient Initiative’ is best illustrated by the 2018 ‘Give Patients A Voice’ video competition, and the 2019 WOD campaign which has highlighted 18 patients and their stories from around the world, with the impact of fractures linked to the ‘That’s Osteoporosis’ tagline. The launch of the new IOF Osteoporosis Risk Check, soon to be available in 34 languages, has been a major accomplishment. The Risk Check, completed by more than 15,000 people during WOD week alone, will help to raise awareness of risk factors and the need for testing in all regions of the world.

Two landmark IOF reports published since 2017 serve as global references to encourage and support much needed policy change in healthcare systems worldwide. The 2nd edition of the IOF Osteoporosis Compendium, a publication first launched in 2017, has been issued for WOD 2019. The ‘Broken bones, Broken lives’ report of 2018 reviews the clinical, societal, and cost burden associated with fragility fractures across six major European countries. Statistics from this report continue to be widely referenced in the media across Europe.

FLS implementation on the rise thanks to Capture the Fracture

I am tremendously proud of Capture the Fracture® (CTF), an initiative which I believe has been the major catalyst for FLS implementation worldwide. This is reflected in the impressive increase of FLS joining the CTF programme, which has grown from 134 FLS in 28 countries at the start of 2016, to a current 388 FLS in 44 countries (an increase of 190 %).  Indeed, interest and growth are accelerating, with more than 67 FLS having joined the programme so far this year alone. It is gratifying to see the greatest increase in LATAM & APAC, the regions which are expected to have a rapid increase in fragility fractures in the decades to come. As well, the Best Practice Framework (BPF) is now available in 12 languages, the BPF questionnaire in 8 languages, and 23 educational webinars in 9 languages have been held since 2016. 

A major development which has stimulated implementation and improvement of FLS worldwide has been the initiation of the CTF mentorship programme. FLS workshops and onsite trainings have been held in 9 countries to date. This year we also launched the ‘Getting to Gold’ programme, a follow-up curriculum for FLS that have participated in FLS workshops, with the first pilot course held in Mexico. Work has already begun on a pilot Benefit Calculator, which is a tool that aims to calculate and show the economic benefit of FLS. We anticipate that this could be a major support and impetus for FLS implementation at the clinical and policy level.

A thriving, engaged membership – now in 100 countries

As our core membership group and our gateway to the patient community, the Committee of National Societies (CNS) is of critical importance. Now with 250 member organizations in 100 countries, the CNS is cooperating more closely than ever on IOF’s key programmes, including science-focused operations such as the Skeletal Rare Disease Programme, Osteoporosis Essentials, and Capture the Fracture.  A recent development has been the integration of the CNS into the annual World Congress, with a designated CNS session, a dedicated CNS Day for patient societies, and the CNS Village, which gives members societies a platform to showcase their activities at the world’s largest congress in the field.

The Committee of Scientific Advisors (CSA) now numbers 159 members, with broader geographic representation and new expertise in basic/translational research. Since 2017, CSA working groups have published numerous highly regarded positions and reviews, increasing the influence of IOF’s voice in osteoporosis research and practice. At the next World Congress, we look forward to a dedicated CSA session.

I have also been pleased to see the Committee of Corporate Advisors’ (CCA) increased interest and attendance at the CCA meetings. Notwithstanding the challenging fundraising landscape, we’ve seen a clear desire to support and partner with IOF on important outreach, advocacy and science projects. 

Affirming our global leadership in science, research and education

IOF’s scientific leadership and influence on clinical best practice in the bone field is highly respected worldwide. Over the past few years, the impressive outputs of our CSA Working Groups have provided authoritative guidance, such as, to name but a few, the review on diagnosis and management of bone fragility in diabetes, the IOF-ECTS recommendations for the screening of adherence to oral bisphosphonates, and the joint position statement on the management of AIBL in hormone sensitive breast cancer. IOF’s co-authorship of the 2018 ‘European guidance for the diagnosis & management of osteoporosis in postmenopausal women’ has also been instrumental in influencing the clinical management of osteoporosis. 

We can all be very proud of IOF’s mission to further high-quality research. Among our key assets in this arena are the annual WCO-IOF-ESCEO Congress, which is the largest in the field and has seen record-breaking numbers of abstracts and growth in delegates; our portfolio of three journals which publish highly-cited research; and IOF support for young investigators through training courses and grants. The unique IOF Skeletal Rare Disorders courses are in demand worldwide, as are the Osteoporosis Essentials courses (19 courses in 17 countries in 2018 alone).

Increased collaboration, fruitful alliances and dynamic regional cooperation

An important development over the past few years has been an increased focus on organizational alliances and cooperation across disease areas, including in the form of joint publications and sessions at scientific meetings. Joint sessions have been held with ASBMR, ECTS, EUROD, ESCEO, FFN, and SICOT among others. I have also been very pleased to announce recent Alliances in the Asia-Pacific including IOF-ISCD-AFOS and Asia-Pacific Fragility Fracture Alliances, and most recently, the ESCEO/IOF GARN-IAGG. Frequent collaborations with member societies and regional organizations in the Latin America and the Asia-Pacific region have magnified IOF’s outreach at the national level, while work with related organizations have increased our outreach across medical specializations.

In closing I should like to again convey my enormous appreciation of the Board, the EXCO, CEO and all the staff for their extraordinary commitment during these past few years. We still have much to accomplish to make bone health and fracture prevention a global priority. I hope to be able to guide the Foundation for a further term, as we work together work towards this important mission.

 

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