Focus on nutrition, patient empowerment and policymaker engagement at successful CNS Day

The all-day event was held in Paris on April 6th, featuring inspiring, interactive sessions attended by 52 IOF member patient societies from all regions of the world.

The Committee of National Societies (CNS) Day, held exclusively for IOF member societies, encompassed a full day’s programme of engaging and informative sessions that focused on topics of relevance to national patient societies worldwide.

Following the successful event, IOF CEO’s stated:

I would like to thank the speakers for their tremendously inspiring presentations which offer important insights to all of us who work to make osteoporosis and fracture prevention a healthcare priority. Many thanks as well to UCB, Pfizer Consumer Healthcare and Sunsweet, whose support has helped to make this day possible.”

Committee of National Societies CNS Day agenda and speakers

Famida Jiwa, chair of IOF’s Committee of National Societies (CNS) Patient Society Sub-Committee, and IOF CEO Philippe Halbout welcomed representatives to the CNS Day.

The programme was launched with presentations of outstanding 2018 World Osteoporosis Day (WOD) campaigns, which were also awarded ‘Best WOD Campaign’ recognition. The presentations were made by Derrick Chan (Taiwan Osteoporosis Association), Marina Tsagarelli (Georgian Association of Skeletal Metabolic Diseases), Laurence Carton (AFLAR - L'Association Française de Lutte Anti-Rhumatismale), Alison Doyle (Royal Osteoporosis Society, UK), and Melita Daru (Osteoporosis Australia). The presentations showed that WOD is an important occasion which raises the media and public profile of osteoporosis by shining a spotlight on the burden of osteoporosis, generating awareness, and improving knowledge among all target audiences, whether they be patients, public, healthcare professionals or policy makers.

IOF Digital specialist Marta Fernandes provided aspirational examples of viral digital campaigns and gave valuable tips on how osteoporosis societies, large or small, can take important steps to establish a digital presence and create an effective, engaging digital campaign. Osteoporosis Canada’s Tracie Napoli, Director of Fund Development and Marketing and Communications, presented the society’s unique ‘Bübl Fashion’ campaign which had enormous digital outreach and helped to raise awareness on the risks of osteoporosis and fragility fractures throughout Canada.

Low calcium consumption is a global problem which has impact on bone health and osteoporosis risk. Bess Dawson Hughes, IOF Board member and bone nutrition expert, discussed strategies that can be taken to act on low calcium intake and also introduced IOF’s new ‘Calcium Academy’ initiative. A new calcium intake calculator being developed for China was presented by scientific expert Wei-bo Xia, and Derrick Chan discussed the barriers to achievement of a calcium-rich diet and how patients can be empowered to increase their intake.

The next segment of the CNS Day was devoted to evidence-based advocacy and how to engage and empower policy makers. The presentation ‘Help me before I crumble: evidence-based advocacy from paper to action’ (presented by Tamas Bereczky from Patvocates) discussed the lessons learned following the publication of the recent IOF report ‘Broken bones, broken lives’ which explores the clinical, societal, and cost burden associated with fragility fractures in France, Germany, Italy, Spain, Sweden and the UK. The focus was on the critical question of how to engage policy makers and drive change so that osteoporosis becomes a healthcare priority. This was followed by presentations showing the barriers and successes of policy focused events held in the UK (Alison Doyle, ROS), France (Thierry Thomas, GRIO), and Italy (Maria Luisa Brandi, FIRMO). IOF Science Project Leader Masaki Fujita showed how IOF’s Capture the Fracture® programme, through its projects, resources and tools, is empowering patients and driving policy changes on secondary fracture prevention. Capture the Fracture’s main goal is to promote and facilitate the implementation of Fracture Liaison Services globally, but it is an initiative that fills in the gap between patients and policy makers.

Jean-Yves Reginster, Chair of the CNS, thanked all 14 IOF member societies who had set up booths onsite at the Congress. The colourful, informative booths illustrated the work of the societies throughout the past year, and offered a meeting point for networking among members and Congress participants. FEBRASGO, the Brazilian Federation of Gynecology and Obstetrics Associations was recognized with the ‘Best Booth Award’.

The final session of the day, dedicated to patient engagement, was hosted by the renowned Canadian health journalist and award-winning presenter Marla Shapiro, Professor, Dept. of Family and Community Medicine, University of Toronto. The interactive session focused on the role of patient societies, and how patients can be empowered to take charge of their bone health by being aware of risks and asking for diagnosis and treatment. The CNS Day wrapped up with an informative presentation on patient empowerment by Elizabeth Thompson, chief executive officer of the National Osteoporosis Foundation, USA who spoke on the state of osteoporosis in the USA, and the NOF’s work to alter attitudes, behaviours and norms so that patients are empowered to ask for the care they need to prevent fractures.