IOF World Wide Conference of Osteoporosis Patient Societies
December 11-14, 2007, Miami
IOF World Wide Conference for Patient Societies sees diversity, plenty of bright ideas and enthusiasm
With participant comments from IOF WWC ranging from “Wonderful sharing with the societies – good information, good materials”, “All in all, an inspirational event” and “Diversity is wonderful and I learned a lot from nearly everyone”, the IOF World Wide Conference for Patient Societies, held from December 11 to 14 in Miami, USA, can be remembered as a successful event. The meeting, which brought together two hundred participants from 60 countries, was co-hosted by IOF and the National Osteoporosis Foundation (NOF) of the USA. The largest number of countries ever was represented at this meeting, illustrating how the osteoporosis movement is becoming more and more global. Photos of the conference are available here.
Latin American members held a regional meeting during the IOF WWC, with more than 30 participants from the region.
Following a welcome cocktail on Tuesday December 11, three days of intensive workshops and informative presentations on a wide variety of topics (including lobbying, education, public relations and fundraising) were followed by the presentation of various grants and awards.
Wednesday’s session started with a warm welcome from IOF CEO Daniel Navid (r) and IOF President Professor Pierre D. Delmas (l), who showed how far we have come since the first IOF WWC was held in Berlin in 1998. (IOF members: See Professor Delmas’ slides).
Next came Maureen McTeer, osteoporosis and women’s health advocate and Patron of Osteoporosis Canada, who gave the morning’s plenary address, entitled, “Policy is about people: We can make the difference.” McTeer told participants, “There will be no fairy godmother waiting to fill our Societies’ coffers or governments panting to place osteoporosis at the top of their government’s health policy and funding agendas.”
McTeer offered three areas of focus in our continued efforts to place and maintain osteoporosis on the political agendas. The first is about the importance for all of us, individually and together, to be leaders in our patient societies and communities, regardless of our professional training or background. Second, she noted, prevention must become an essential part of any country’s national osteoporosis plan. Her third point was that we need to be both voices for people with osteoporosis, and a vehicle through which these individual voices can be heard.
A new addition to the IOF WCO program, the Bright Ideas segment, proved very popular. Following an introduction by Donna Spafford, IOF Senior Policy Consultant, three patient society representatives highlighted many very bright ideas that had been submitted and compiled into a presentation, prior to the meeting. Bright Ideas in Communications were presented by Tereza Hough, of the National Osteoporosis Foundation of South Africa; Bright Ideas Jackpot were presented by Andrea Gasparik, Association for Prevention of Osteoporosis in Romania (ASPOR), and Verna Brooks Mc Kenzie of the Jamaican Osteoporosis Society presented Bright Ideas on how to work with Celebrities/Dignitaries/Special Events. (IOF members: see Bright Ideas presentations)
Also during the Wednesday morning session, Janice Blondeau, IOF Communications Officer; Stephan Goemaere, of the Belgian Bone Club; and Lea-Ann Randall, representing the Emirates Osteoporosis Society (EOS), showcased World Osteoporosis Day 2007 activities, especially IOF initiatives, the European launch in Brussels and the WOD 2007 Global Launch in Dubai. Speakers noted that more than three million visitors have been to the IOF website during October and November 2007, as a result of WOD 2007 activities, and more than 42 million WOD 2007-related media impressions have been measured so far. Delegates were also briefed on plans for World Osteoporosis Day 2008, which will be held globally on October 20, celebrating the theme “Stand Tall, Speak up for your bones”. (See World Osteoporosis Day 2007 (PDF, 3.65 MB) presentation)
After a break for lunch, six concurrent workshops, lead by IOF members, tackled the following topics: “Developing a comprehensive three-year program”, “Policy tools: What makes an effective policy paper?” , “Partnership with non-pharmaceutical companies”, “Growing from a small to medium (sustainable) osteoporosis society”, “Patient support groups”, and “How to prepare, write and present an effective fundraising proposal”. Each workshop ran for three hours and there was a repeat of each session on Thursday December 13. A rapporteur from each topic presented the results during Friday morning’s plenary session. (IOF members: see Workshop Results presentation)
Thursday lunchtime saw a Meet-the-Sponsors lunch which gave sponsors and participants the opportunity to exchange experiences and business cards.
Thursday afternoon’s session was focused on lobbying, working with, and changing the opinions of government health ministries, under the heading “How can we change government policy?”
Judy Black, NOF Board Member and Washington-based campaigner and policy advisor, gave a stirring presentation on the topic, “Get involved: One voice can make a difference”. Black told IOF WCO participants, “We are torturing our grandmothers and grandfathers at the end of their lives and we don't have to.”
She urged us all to take the first steps toward putting a face on this disease to elected and appointed officials in our counties, saying, “You must pull on the heartstrings of policy makers to stir them to action. Use your voice to stop the broken bones and the broken hearts. Osteoporosis is like a time bomb ticking in our youth, waiting to explode in our most valuable asset – our bodies! I urge you to press forward.”
The next topic, “Prevention and bone health: Building a strong world” was covered in a video message by Dr. Richard Carmona, 17th Surgeon General of the United States, who was unable to attend in person. Dr Carmona shared experiences of the preparation of the 2004 Surgeon General’s Report on Bone Health and Osteoporosis.
He said, “One of the things that everyone needs to do, no matter where in the world you are located, is to assess your environment, see what the magnitude of the problem is in your community, but also to see who your natural allies are – who are the doctors, the nurses, the teachers, the educators, and others who understand this problem and would be willing to work with you to begin an agenda that would advance the best science, in order to change behaviors in your population, so that people would appreciate excellent bone health.”
The EU Osteoporosis audit was addressed by Istvan Marton, of the Hungarian Osteoporosis Patients Association (HOPA), who stressed the importance of the EU Osteoporosis Audit as a means of keeping osteoporosis on the EU agenda, to prevent the first fracture and to have early treatment available. He added that public pressure needs to be used to change the current situation in many EU countries, and that the osteoporosis movement can harness a very large political force, given the incidence of one in three women and one in five men being affected by osteoporosis.
Ambrish Mithal, of the Indian Bone and Mineral Society, spoke to the Asian Osteoporosis audit, as a tool for policy change. He commenced by saying that osteoporosis is a pediatric disease with geriatric manifestations. He stated that the ultimate goal of the Asian audit is to convince policy makers of the economic burden of osteoporotic fractures in South Asia, to move this higher on political agenda. Next the IOF policy campaign was overviewed by Daniel Navid.
On the evening of December 13, 2007, the Hellenic Society of Osteoporosis Patient Support was awarded the IOF- Linda Edwards Memorial Award – a grant of SFr 20,000 presented to one young, successful patient society every two years. Founded in 1997 in Athens, the Hellenic Osteoporosis Patient Society has made many significant achievements in its 10-year history. From its origins as a local group of concerned health professionals, the society has developed into a professionally managed and structured organization with more than 6,000 members across Greece.
The traditional IOF Family Dinner, which followed, proved popular as it provided all participants the opportunity to catch up with one another since the last IOF World Wide Congress of Patient Societies and to meet some new faces.
On Friday December 14, after the workshop summaries, a state-of-the-science update was chaired by Professor Ethel Siris, NOF President, with presentations by Professor Cyrus Cooper, Chair of IOF Committee of Scientific Advisors (CSA) who spoke on “Osteoporosis: Future trends in epidemiology and risk assessment”; Professor Jean-Yves Reginster, IOF General Secretary, who covered “New insights into the current management of osteoporosis”; and Professor Pierre D. Delmas, IOF President, gave us a glimpse into the future with his presentation entitled, “Treatment of osteoporosis: new developments and future trends.”
Professor Cooper noted that during the last few months he had seen a sample of the Fracture Risk Assessment Tool being developed by the WHO and that in the next year, this tool will come into practice. CNS members were commended for their hard work in raising awareness of osteoporosis prevention by Professor Reginster, who provided an update on the current preventative and fracture treatment options available.
Professor Delmas noted that unmet needs remain in regards to treatment of postmenopausal osteoporosis, that new antiresportives and SERMS are in development, and also that new anabolics are needed but bone structure and safety present challenges. He stressed that current registration guidelines are an obstacle to the development of innovative therapies for osteoporosis.
Also during Friday’s session IOF Grants were presented (see below) and videos from 2005 Grant winners were shown.
IOF-Novartis Strong Bones Academy Grants
This award, a grant of USD 14,000 to each of three societies, supports intensive professional skills training workshops for IOF member national societies presented to:
• Brazil: National Federation of Osteoporosis Patients Associations (FENAPCO).
• Israel: Israeli Foundation for Osteoporosis and Bone Diseases (IFOB)
• Vietnam: Vietnam Rheumatology Association
IOF-Roche-GSK Communications Grants
Three grants of USD 10,000 each to the best communication campaigns developed by IOF member national societies presented to:
• China: Chinese Osteoporosis Foundation of Chinese Development Foundation for Science & Technology (COF-CDFST)
• Russian Federation: Russian Association on Osteoporosis
• Uruguay: Uruguayan Rheumatology Society
IOF-Amgen Health Professionals Awareness Grants
Five grants of USD 10,000 each were awarded to the best awareness
program developed for health professionals by IOF member national societies presented to:
• France: Groupe de Recherche et d'Informations sur les Ostéoporoses (GRIO)
• Hong Kong: Hong Kong Osteoporosis Foundation
• Italy: Lega Italiana Osteoporosi (LIOS)
• USA: National Osteoporosis Foundation (NOS)
• Venezuela : Sociedad Venezolana de Menopausia y Osteoporosis (SOVEMO)
Lily Sigma 6 donation
Professor Pierre Delmas, IOF President (r), and Daniel Navid, IOF CEO (l) accepted a donation of USD 24,400 from Donna Ulman Babbs (c), of Eli Lilly and Company, as part of Lilly’s Sigma 6 program, during IOF WWC in Miami.
In summary, IOF WWC Miami 2007 was an intense three days with the opportunity for everyone present to learn something new. Participants truly benefited from this melting pot of ideas, cultures, languages and experiences, which will be invaluable as we prepare for a busy year in 2008.
IOF sincerely thanks the corporate Gold sponsors who have supported the IOF World Wide Conference of Osteoporosis Patient Societies: Amgen, Eli Lilly, Novartis and Roche-GSK and Global Silver Sponsors, The Alliance for Better Bone Health and Fonterra Brands.
