Links
International Lymphoedema Framework – our parent organisation on which much more information may be found about us and lymphœdema. In particular we would direct you to the pages about the children’s project:
Children’s Project – International Lymphoedema Framework
We are not responsible for the content of external sites, but we list some of them here in the hope that you will find them helpful.
- List of links to be added here – ordering to be changed
- Association Vivre Mieux le Lymphedema
- https://avml.fr/
- Cette association a pour but de faire reconnaître le handicap du lymphœdème et ses conséquences dans la vie quotidienne en informant le patient, les thérapeutes et les pouvoirs publics, pour une meilleure prise en charge de la pathologie.
- Partenariat Français du Lymphoedème
- https://lympho.fr/
- Notre objectif est d’accompagner et de soutenir les patients atteints de lymphœdème.
- The British Lymphology Society
- thebls.com
- The British Lymphology Society is a dynamic and innovative body providing a strong professional voice and support for those involved in the care and treatment of people with lymphoedema and related lymphatic disorders, including lipoedema.
- VASCERN
- https://vascern.eu/
- The European Reference Network for Rare Multisystemic Vascular Diseases is dedicated to improving the lives of patients with rare vascular diseases across Europe.
- Lymphie Stong
- lymphiestrong.com
- Lymphie Strong is an online resource for people with lymphœdema by people with lymphœdema
- Lymphido
- https://lymphido.it
- Associazione di volontariato per i pazienti di linfedema primario
- Italian patient association for pædiatric/primary lymphœdema
- Children’s Hospital Colorado
- FAVA
- http://www.favamulti.fr
- La filière de santé des maladies vasculaires rares à atteintes multisystémiques
- LE&RN
- lymphaticnetwork.org
- The Lymphatic Education & Research Network
- HEAL
- https://www.healequine.com/
- Holistic Equine Academy of Lymphedema
- Svenska Ödenförbundet
- https://www.svenskaodemforbundet.se
- Stora boken om Lymfödem (also in English – LSN)
- Sveriges patient- och intresseförening för personer med kroniska ödem.
- Brylan’s Feat Foundation
- brylansfeat.org
- American pædiatric patient association
- Netzwerk für betroffene Familien, Ärzte und Therapeuten
- https://kif11kids.com/
- KIF11 Kids e.V. German patient association for Kif11 children
- Home
- lwocommunity4families.com
- English dedicated website for children/families
- Lymphœdema Support Network
- CLSIG Children’s Charter
- St George’s pædiatric investigation tool for patients with primary lymphœdema.pdf
- Big Book of Lymphœdema for children (also in Swedish Svenska Ödenförbundet)
- British Medical Journal
- bmj.com
- Update and audit of the St George’s classification algorithm of primary lymphatic anomalies: a clinical and molecular approach to diagnosis – Journal of Medical Genetics
- Jo Rising Foundation
- https://www.jorising.org/
- Raising awareness in the community, advocacy of lymphœdema in the medical community and to provide shoes for children affected by the disease.
Our policy
In providing the links above we have been guided by the following principles:
- Accuracy
Lymphœdema is a complex condition and associated with many co-morbidities. Our understanding of the underlying causes is not complete, and the comparative efficacies of the treatments presently available not yet exhaustively nor comprehensively studied. With this in mind the accuracy of information available in any forum, including this one will limited by our present understanding, and may change as research progresses. - Impartiality and Diversity of Opinion
The limited understanding of lymphœdema to which we have alluded necessarily means that whilst there may be some general agreement, perhaps even a consensus, there may be those who take a different view or have a different understanding than we on this site, We are aware that a lack of knowledge is incomplete knowledge and without full knowledge we cannot with full assurance say that those with whom we would not agree are wrong, though we believe that they are, therefore in the interests of impartiality and presenting a diversity of opinions, you may find that the links contain some views with which we do not agree. - Harm and Offence
We do not intend to provide links to sites which intentionally use language or promote activities which would cause harm or offence. This must be understood in the context of the Hippocratic oath: Do no harm. Surgery, which may be mentioned in links, is in the first instance harmful, but is performed with the intention of doing good to and for the patient. - Re-use and Reversioning
We may have provided a link to an external site rather than reproducing the same material on our site. Where this has taken place, it is likely that there will other links elsewhere in our pages to that site. These sites are noted in the list above. - Independence from External Interests
In order to maintain our independence from external interests, whilst we are prepared to accept grants, these grants must be unconditional donations to provide for the maintenance of the site. Any surplus arising will be held by the ILF for future costs whilst this site exists or the general purposes of the ILF who underwrite the costs of the site should the site close. We will not provide links to market places for the purchase or sale of commercial products. - External Relationships and Financing
We have not received any payment for the inclusion of any of the links provided here. Where we have received funding, the organisations who have provided that funding will be found listed on our sponsors’ page. Exceptionally, if a link has have been provided here to a page the owner of which subsequently becomes a sponsor, that fact will be noted on this page, if we consider that it is still appropriate to include the link here.
The presence of a link to an external site on this page does not mean that we agree with or endorse the views expressed on that external site.
If you find the material on any of the linked sites which you believe is unhelpful, inaccurate or misleading then the proper place for speaking about that is with the editors of that site and not with us as we are not responsible for the content of those sites. The discussion about their content should be on their site not ours. If you wish to draw this to our attention then please use the contact form here to do so. It may be that we need to address the issue you raise here in an appropriate way.