lymphfantastic

Die Suche geht weiter- The search goes on


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INTERNATIONAL LYMPHOEDEMA FRAMEWORK- umfrage Kinder mit Lymphödem

Die meisten Forschungen sind auf English und ich bin froh dass the International Lymphoedema Framework eine Umfrage gestartet hat speziell für Kinder. Da gibt es noch einiges zu tun und es ist offensichtlich dass in diesen Bereich viel mehr gemacht werden muss.  Die psychologische und soziale Auswirkung für die kleineren und deren Familie ist ein wichtiger Aspekt.  Es wäre wunderbar wenn die betroffene Familien sich bei diese umfrage beteiligen würden, wenn auch auf English.  Zusätzlich wird weiter geforscht was Genitalödeme anbetrifft, aus eigene Erfahrung weiß ich das dieses Thema noch als Tabu gilt und einfach viele überfordert.  Schön zu sehen dass es in andere Länder weiter geht.   


LYMPHO NEWS

2019 has been an exciting year for the ILF. We have achieved many great successes in our ongoing efforts to improve the treatment and management of lymphoedema worldwide.

We would like to take this opportunity to thank all our affiliates, national frameworks, partner organisations and industry partners for your commitment during 2019. Without your engagement and support, our achievements would not be possible.

 

Children and young people living with lymphoedema – Quality of life tool

Lymphoedema is a very rare disease in children and young people that can make the young person feel that they are ‘alone in the world’. The ILF wants to validate a Quality of Life tool to give greater understanding of how this condition affects the life of the person who has it.

If you have a child aged 5-12 years or a young person aged 13-21 years who has lymphoedema their help in this would be very valuable. Please encourage them to answer the questionnaires by clicking the link below.

The questionnaire takes about 30 minutes to answer. Information about it can be found once the link has been accessed:  www.surveymonkey.co.uk/r/LYMPHOQOL

 

Genital oedema education needs

Genital oedema is a complicated condition that can cause physical, psychological and social impact. From prior research, we know that lymphoedema professionals do not fully appreciate the impact of the condition and have unmet educational requirements. A new ILF education project is aiming to further understand the educational needs and tools that we should be developing, from both patients’ and professionals’ perspectives.

The main phase of the genital oedema education survey was recently closed with a total of 666 respondents. The data will now be analysed alongside that from the focus groups which took place with experts from Wales, England, and the USA.

Ich danke den ILF Team für deren unermüdliche arbeit.

 


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THE 8th INTERNATIONAL LYMPHOEDEMA FRAMEWORK CONFERENCE

6-9 June 2018, Rotterdam, The Netherlands 

The ILF 2018 Conference will gather practioners, researchers, affiliates and stakeholders from all over the world.

It is thus a great opportunity to present your knowledge to a multi-stakeholder audience.  

We look forward to welcoming you to Rotterdam in June! 

On behalf of the NLNet and the ILF Board



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ILF Conference 21-24 June 2017

2017Lymphedema Framework

The 7th International Lymphoedema Framework Conference will be co-hosted with the Italian Lymphoedema Framework and will be held in beautiful Siracusa, Italy from 21-24 June 2017.

Topics will include LIMPRINT and related ILF projects; National framework session; Children’s lymphoedema; Heart failure and chronic oedema in older patients and Wounds and chronic oedema.

The programme will of course offer plenty of networking opportunities.

Abstract submission will open shortly – please note the submission deadline of 31 January 2017.

We hope to see you in Siracusa in June.


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Compression Therapy Position Document

Many thanks to The International Lymphoedema Framework. Keep up the fantastic work !

A very interesting position document on compression bandaging.

Klicke, um auf Compression%20bandaging%20-%20final.pdf zuzugreifen


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ILF – International Lymphoedema Framework

 

National Frameworks

Since its incorporation in 2009 – the International Lymphoedema Framework (ILF) has been supporting the efforts of countries focused on establishing their own national frameworks to advance lymphedema care in their respective countries. We are proud to have the following national frameworks established and part of the ILF network: Belgium, Canada, Denmark, Australia, Japan, Italy, Greece, France,The Netherlands, United States, UK and most recently Ireland as highlighted below. Several other countries, both in developed and developing countries, are in various stages of organizing a national framework. We plan to highlight at least one country framework in each of our newsletters – to give you a perspective of what actions, activities and developments are happening around the world. As this is our first newsletter in a while we felt it would be a great idea to highlight both new and long established frameworks alongside each other. 

 

National Lymphoedema Framework Ireland

It is with great pleasure, excitement and a little trepidation we are delighted to say NLF Ireland has officially been launched by Dr Vaughan Keeley, Margaret Sneddon, Kay Morris and Meadbh Mac Sweeney, all guest speakers at the first National Lymphoedema Conference held at the Mater Misericordia in Dublin on September 24th. We have 11 very strong stakeholders from South, East and West Ireland representing patients and lymphoedema service users, nurses, physiotherapists, occupational therapists, educators in lymphoedema, MLD therapists both public and private, and a consultant vascular physician who has been a strong patient advocate.
Various stakeholders will have a voice back to the associations who have worked tirelessly over the last 15 years and more, to improve services for lymphoedema patients. Such associations include Lymphoedema Ireland, Irish Cancer Society, and MLD Ireland.
It will be incredibly powerful to have such strong proactive voices, each extremely experienced in their own field, clinically and academically, around the same table working together for one cause … to raise awareness of and improve services for those with lymphoedema in Ireland.
It is equally powerful and supporting to be part of a larger framework, thus avoiding the need to ‘reinvent the wheel‘ as the suggested guidelines and structure facilitate focused discussion.

The Danish Lymphoedema Framework 

The Framework has been given a grant of 5 million kroner, over four years, from the Danish Cancer Foundation, to conduct a study on early detection of lymphoedema in the lower extremities after gynaecological  cancer. Three out of four of the biggest health departments are joining the study. The remaining department could not participate as they had another study running at the same time. The protocol is almost ready for approval.

The Canadian Lymphedema Framework ( CLF)

The CLF is celebrating the 15th issue of Pathways, their national lymphedema magazine. The three pillars of the CLF are Education, Research and Partnerships. Since 2009, the CLF has been busy publishing standardized educational material, consensus statements, research agendas for Canada as well as leading and participating in lymphedema research. A new report highlighting all the successes of the CLF can be found on page 25 of their Fall magazine which can be found here. Learn more about the role of the ILF, CLF and its collaborative model with existing lymphedema organizations in the article on page 22 entitled “Lymphedema Community Organizations Can Drive Change”. We encourage you to learn more about this framework by visiting the newly launched website www.canadalymph.ca.

 


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Asia Pacific Lymphology Conference to be held in May, 2016

From the Scientific Committee Chair

Dear Colleagues and Friends,

It is with great pleasure that we invite you to join other lymphedema health professionals, scientists and consumers from around the world for the 2016 Asia Pacific Lymphology Conference to be held in May, 2016 in Darwin, Australia. The theme for the conference ‚New Networks – New Solutions‘ is based on the unique opportunity we have to bring together the 11th Australasian Lymphology Association Conference and the 6th International Lymphoedema Framework Conference. The scientific program is designed to stimulate the development of new partnerships and enrich prior multidisciplinary collaborations, thus improving the way we prevent, diagnose and manage lymphatic diseases and disorders.

The planned presentations and workshops to be delivered by our keynote and invited speakers will cover a range of topics, including molecular and cellular understanding of the lymphatic system, advances in diagnostic methods, and understanding the lived experiences of those with lymphatic disease. Our two internationally-renowned keynote speakers (Prof Maryls Witte and Prof Terence Ryan) bring to the conference a rich history in the lymphology setting, and have a deep understanding of the impact of lymphatic disease on the developed and developing world. Their contribution to this International Conference will ensure we learn from the past and present in a way that will facilitate rapid advances and the identification of new solutions for the future.

The conference is being held in Darwin – the Northern Territory’s capital city and the gateway to South-East Asia. Darwin is a beautiful city in its own right, worthy of setting time aside to explore. It sits on the edge of a gorgeous harbour, is a modern sophisticated city while being steeped in history, and despite enduring many hardships over the years, remains a friendly, laid-back city that you’ll want to visit again. While in the Top End, you’ll also want to take the opportunity to experience some of the most unique places in the world, including the World Heritage listed Kakadu and Litchfield National Parks, both of which display some of the most spectacular fauna and flora Australia has to offer.

We all look forward to seeing you in the Top End in May!

Kind regards
Sandi Hayes
(On behalf of the Scientific Committee)