AssociationsMany associations, societies and charities throughout the world specialise in providing healthcare professionals and patients with information and support in the area of lymphoedema and associated conditions. Below are a number of such organisations:
The highlight of the past six months has been BLS Lymphoedema Awareness Week, 20–26 April. Over 35 events including coffee mornings, poster displays and information sessions were run by BLS members throughout the UK. Advice on lymphoedema and its diagnosis was sent to every single GP practice in the country and over 5000 patient guidance leaflets were handed out. Extensive press coverage has been established and maintained with a major article in the Daily Mail only last month. The benefit to BLS from raised awareness has been considerable. More pharmaceutical companies are now recognising the relevance of their products to lymphoedema and its related conditions. As a result, BLS has seen a 50% increase in the number of its corporate sponsors. BLS played a major role in the International Lymphoedema Conference at Ascot (21–23 April) which was organised and hosted by Wounds UK. This was a highly successful event and BLS look forward to further collaboration with Wounds UK in the future, while maintaining the constructive partnerships that have been built with the International Lymphoedema Framework (ILF) and the Lymphoedema Support Network (LSN). October will see the BLS Annual Conference being held in Sheffield. 2009 will see more speakers, more delegates and a greater number of exhibitors than ever before. It is hoped that the momentum generated by Awareness Week will continue to grow and be given a further boost by the Sheffield Conference.
Centre for Neglected Tropical Diseases (CNTD). The Liverpool School of Tropical Medicine, recognising that 'neglected tropical diseases' are significant poverty promoting condition and high on the global public health priority agenda central to achieving the Millennium Development Goals (MDGs) has expanded the activities of the Lymphatic Filariasis Support Centre to become the Centre for Neglected Tropical Diseases. The expansion acknowledges the Centre's expertise to work on other NTDs. In July 2008 the Centre welcomed Professor Moses Bockarie as its new Director and his vision for CNTD is "to improve the quality of life for the bottom billion by providing technical assistance to establish an evidence base for developing tools and control strategies for NTDs".
The German Society of Lymphology is holding its 33rd Annual Congress, ‘Lymphology — Critical Aspects’ on 29–31 October 2009 at Stadthalle, Aschaffenburg. The congress will cover: lymphedema fundamentals; lymphangiogenesis; diagnostic procedures, state of the art; patient management and quality control; lymphoedema treatment (guidelines); obesity problems; MLD in cosmetic procedures. Sessions will include plenary lectures, workshops and a round table discussion with patients. The Presidents of the Congress are Ulrich Herpertz, MLD, Secretary General German Society of Lymphology, e-mail: email@example.com and Oliver Gültig, Senior Instructor MLD/CDT, e-mail: firstname.lastname@example.org. For more information, please contact Pia Hermann, Tel: +49 (0)7651/971611; e-mail: email@example.com; or go online to: http://www.dglymph.de.
The major thrust of the International Society of lymphology (ISL) at the moment is the 22nd Lymphology Congress which will be held in Sydney with pre- and post-congress sessions in Cairns (Barrier Reef) and Ayers Rock. The detailed programme is available at the website: http://www.lymphology2009.com. This congress, whose themes are based around lymphangiogenesis, lymphatics, lymphoedema and life, brings experts from around the world together with an aim, as an endpoint, to improve patient outcomes. The congress particularly welcomes case studies or innovative and novel ideas so that we may expand our horizon of knowledge. A range of scholarships are available for attendance.
The Israel Lymphedema Association (http://www.ial.org.il) held its fourth annual conference on Sunday, 3 May 2009 at the Faculty of Agriculture, Hebrew University, with the participation of approximately 160 lymphoedema patients and their families, physical therapists, other medical personnel, physical therapy students and representatives of the Israel Cancer Association. Ongoing activity of the Association includes support groups in various parts of the country, including initiation of a new group in the central area in March 2009. Programmes of the support groups, led by lymphoedema patients and physical therapists certified to treat lymphoedema, include guest speakers, interaction between patients, their families and others and presentations by group members or invited guests. One of the Association’s projects for the coming year includes contact with various health funds in Israel’s national health system to discuss and promote benefits and support available to lymphoedema patients. A representative of the Association participates in meetings with representatives of the funds in order to advance our interests and to ensure that the rights accruing to patients are received in practice.
The Japanese Society of Lymphology was established in 1988. It now has about 400 active members, involved in the disciplines of anatomy, histology, physiology, pharmacology, immunology, cardiovascular medicine, radiology and surgery. The current president is Professor Toshio Ohhashi, who is a chairman and professor in the Department of Physiology, Shinshu University School of Medicine. The main principle of the society is to develop the field of lymphology combined with cardiovascular medicine, oncology, and innate immunology. In particular, the society is encouraging clinical research into lymphoedema, sentinel lymph node navigation surgery, and lymphatic metastasis of carcinoma cells in Japan. A symposium entitled, ‘Lymphangiogenesis and Lymphatic Metastasis of Carcinoma Cells’ is currently being organised by the Japanese Society of Lymphology to be held on 27 July until 1 August, 2009 at the 36th International Congress of Physiological Sciences (IUPS 2009) in Kyoto, Japan.
The LSN takes the lead role in educating and supporting patients and is the largest information resource for lymphoedema in the UK, providing two self-help DVDs and 22 gold standard fact sheets that are widely distributed to patients, hospitals and lymphoedema clinics throughout the country. The LSN is also committed to raising awareness of lymphoedema as a major health condition to patients, health authorities, healthcare professionals and politicians and actively campaigns for improved national standards of care.The LSN is delighted to announce the launch of its new ‘self-management for lymphoedema’ DVDs, narrated by the Charity’s Patron, Zoe Wanamaker. The DVDs feature information on lymphoedema, exercise, the application and care of compression garments and skin care together with an easy to follow simple lymphatic drainage self-massage technique. There is also a section where a variety of people living with lymphoedema talk about their personal experiences of the condition, these are practical, powerful and often moving accounts of the reality of lymphoedema. For more information visit: http://www.lymphoedema.org/lsn Telephone: 0207 351 09900
The Lymphoedema Association of Australia (LAA) was founded by John and Judy Casley-Smith in 1982 to encourage research into lymphoedema and to spread information among doctors, therapists and patients. Its website contains an excellent summary of information about lymphoedema, its causes and treatment, including views on bandaging and garments, as well as essential reference material. The website has been progressively updated in 2007 and contains useful suggestions to patients about the range of treatment and management options. It is strongly recommended that patients discuss these with their doctor prior to undertaking any of them. In the first quarter of 2008 the site featured a new section on recent research into lymphoedema, its symptoms and treatments, which was being conducted at Flinders University and Medical Centre. It will, however, continue to provide information which has an international perspective to it. Throughout 2009, the site will contain a progressive release of details relating to the 22nd International Congress of Lymphology which will be held in Australia in Sydney. The LAA website can be accessed at: http://www.lymphoedema.org.au.
The Lymphology Association of North America (LANA) is a non-profit corporation composed of healthcare professionals, including physicians, nurses, massage therapists, physical therapists and occupational therapists, experienced in the fields of lymphology and lymphoedema. These professionals have acknowledged the need for a North American certification examination for lymphoedema therapists, to test knowledge considered fundamental in the treatment of lymphoedema. To date, we have certified over 1,000 therapists and have recertified over 300 therapists. If you wish to contact LANA for additional information, please feel free to email LANA at: firstname.lastname@example.org or contact LANA by phone at: 773-756-8971. Our mailing address is LANA, P.O. Box 466, Wilmette, IL, 60091 USA.
The LSN takes the lead role in educating and supporting patients with this condition. The charity is the largest information resource for lymphoedema in the UK, providing two self-help videos/DVDs and an extensive range of fact sheets that are widely distributed to patients, hospitals and lymphoedema clinics throughout the country. The LSN is also committed to raising awareness of lymphoedema as a major health condition to patients, health authorities, healthcare professionals and politicians, and actively campaigns for improved national standards of care. As part of its ongoing work to raise awareness, the LSN is launching a lymphoedema ribbon and wristband campaign, both items bear the words ‘Lymphoedema Matters’ and will be available throughout 2009 for a suggested donation of £1 per item. Alternatively, patients and healthcare professionals could choose to have a mixed box of items to offer to friends, family and colleagues, again for a suggested donation of £1 per item. For more information please contact the LSN office. In addition, the LSN, the British Lymphology Society (BLS) and the International Lymphoedema Framework (ILF) are currently working together to produce simple to follow guidelines called ‘the 5 things you should know about lymphoedema’ for GPs, other healthcare professionals, patients and those at risk of developing the condition. The campaign will be introduced on the Healthcare Republic website via an advertorial written and funded by the LSN, and all of the awareness campaign information will be available on the LSN, BLS and ILF websites. LSN trustees would like to wish the International Lymphoedema Framework Conference every success. For more information visit: http://www.lymphoedema.org/lsn or telephone: 0207 351 0990
MLDUK was formed in 1995 to educate healthcare professionals and the general public about the benefits of manual lymph drainage (MLD) and its applications for lymphoedema and other conditions. MLDUK maintains a high standard for the practise of MLD in the UK. It has also been our role to give the public confidence in choosing an MLD therapist, as those on our register must show proof of having completed training in one of the four main schools (Casley-Smith, Földi, Leduc and Vodder), and also that they are both insured and up to date in their practice. MLDUK publishes a list of recognised courses for therapist training and also a register of qualified practitioners. It has a helpline for anyone seeking information about MLD and maintains a website with both practical information and training courses. Last year the charity MLDUK Lymfund was launched. Lymfund offers funding for a limited number of MLD/CDT treatment sessions for those patients in dire need who are being seen by a member of MLDUK. The 2010 Annual Conference will be held in High Wycombe on the 8th and 9th May 2010 — please contact the administrator for more details. Contact MLDUK on 0844 800 1988 or visit the website: http://www.mlduk.org.uk
Each year, on 6 March, the NLN and the lymphoedema community nationwide celebrate Lymphoedema Awareness D-Day, a special day set aside to honour inspirational lymphoedema patients: those who have contributed to the community or who have shown great courage in their struggle with disease. On this day, we raise our voices together and say: this is it; we demand treatment, coverage and attention to this condition. In past years, some have been honored at gala events, some in small, intimate gatherings, and others, one-on-one by their health care provider, family or friend. This day provides us with a special opportunity to alert our local media, medical community and neighbourhoods about lymphoedema; to create awareness about the condition, who is at risk, and available treatments, so not one more person will be told they just have to live with it, that nothing can be done. The NLN is a proud supporter of the American Lymphedema Framework Project (ALFP) which was launched in 2008 as a national collaborative initiative in partnership with the International Lymphoedema Framework (ILF) under the leadership of Jane Armer and a core group of multidisciplinary clinicians with a demonstrated expertise in LE serve as the steering committee. The goal of the ALFP is to create and implement a nationally-endorsed standard of evidenced-based best practice for LE within the different service models in the US.
The Dutch Lymphedema Network (NLNet) provides a unique forum in the Netherlands for both patients and healthcare professionals involved in lymphoedema and lipoedema. It started in 2000 and offers information and contact details for therapists, regional support groups, as well as a discussion forum. In 2006, NLNet was joined by other leading organisations in the Netherlands involved in lymphology. It facilitates discussion and the exchange of ideas on the internet, enhances public awareness, stimulates multidisciplinary healthcare cooperation and encourages an interest among professional stakeholders. To achieve these goals, there is a HON (http://www.hon.ch) certified internet website, a journal (Lymfologica), regional patient support groups and an annual congress. Membership costs 20 euros per annum, which entitles you to full access to the internet platform and other offers from NLNet. NLNet carry out the national and international guidelines on lymphoedemea and are actively cooperating in the development of an European Lymphedema Network (http://www.european-lymphologic-network.de) and links to other international organisations. For further information please visit: http://www.lymfoedeem.nl.
In September 2009, the Scandinavian Forum of Lymphedema held a conference in Oslo to celebrate 20 years of work. During this time, over 500 physiotherapists in Norway, Denmark, Sweden and the Fareo Islands have been taught decongestive lymphatic treatment (CPD). Before that, from 1984–1989, only 10 physiotherapists had their education in CPD at the ‘Földi-school’ in Germany. Since 1985, together with the lymphoedema patient association (NLF), the forum has been giving information to doctors and therapists. Physiotherapists in Norway have their own professional group within the Norwegian Physiotherapist Association (NFF) and, in 1997, CPD was included in the Norwegian procedure for cancer treatment. In 2000, the NFF initiated oncological and lymphological physiotherapy as a specialty. To qualify in this field requires 800 hours of physiotherapist-specific in-service courses in this area, as well as courses in oncology and research. To maintain this specialty, documentation must be provided after seven years that you are still active within the profession and that you have participated in a peer mentoring group. In 2002, the Forum arranged the first congress in lymphology in Scandinavia for physiotherapists. It took place in Oslo. Subsequently, Sweden as well as Denmark have had their congresses and we are looking forward to the next congress to be arranged in Finland, 2010. For more information: http://www.lymfologi.no
The Australasian Lymphology Association (ALA) is the peak national lymphology body for health professionals in Australia and New Zealand, which strives to improve the management of those with, and at risk of developing, lymphoedema. The association endeavours to enhance communication between health professionals, educators, relevant authorities and government in regard to oedema and lymphoedema. It advocates for equitable access to lymphoedema treatment in Australia and New Zealand. Our biennial conference is planned for 27–29 May 2010 in Melbourne, Australia. The theme of the conference is ‘Lymphoedema — Reflections of the Past, Inspiration for the Future’. The ALA welcomes international colleagues to its 2010 Conference. Detailed information is available on the ALA website: http://www.lymphology.asn.au. At the recent 1st International Lymphoedema Framework (ILF) Conference, ALA President Kerryn Shanley and Professor Neil Piller were invited to join the International Advisory Board of the ILF and the ALA is exploring opportunities for an ILF project in Australia. The ALA believes that facilitating Australian involvement in this project will provide our best opportunity to encourage broad change in our health system, funding models and resourcing of lymphoedema services and programmes across Australasia. The ALA is continuing to work towards a graduate certificate in lymphoedema management and the development of a national lymphoedema practitioner register.
The Austrian LymphLiga (ÖLL) is a non-profit organisation founded in 1994 to provide information and support to lymphoedema patients and healthcare professionals. The ÖLL also endeavours to raise awareness of lymphoedema as an underestimated disease to health authorities, politicians and the general public. The ÖLL publishes a newsletter twice a year and holds regular local seminars for patients. A biannial national congress for health professionals is also organised by the ÖLL to promote the interdisciplinary collaboration and to provide the latest update on lymphology research. For more information please go online to: http://www.lymphoedem.at.
The Global Alliance to Eliminate Lymphatic Filariasis (GAELF) was formed in 2000 with the sole purpose of supporting the Global Programme to Eliminate Lymphatic Filariasis (GPELF), which is based in the Department for Neglected Tropical Diseases at the World Health Organization (WHO). GAELF provides fundraising, advocacy, communications and technical assistance in support of the GPELF’s two goals: 1. The elimination of LF as a public health problem by 2020 2. The alleviation of physical, social and economic hardship in individuals who have LF-induced disability. The Secretariat of the GAELF is based at the Liverpool School of Tropical Medicine.
The Leg Club model, a pioneering social approach to the treatment of conditions of the lower limb and leg ulcers, is being used as a source of reference by the Department of Health in its Quality, Innovation, Productivity and Prevention programme (QIPP). QIPP is key to building on the progress made in implementing the commitments set out in Lord Darzi’s White Paper, ‘High Quality Care for All’. The DoH references the benefits of the Leg Club model which include: reduced costs as a result of fewer home visits; care delivered in a non-medical setting without the need for appointments; patients encouraged and supported by peers; care coordinated with other services.