Lymphovenous and Lymphedema Links

Support groups and web sites

Lymphedema Frameworks
A number of lymphedema treatment frameworks are in development around the world. They include:

• The International Lymphoedema Framework
• The Canadian Lymphedema Framework
• The American Lymphedema Framework Project

National Lymphedema Network
www.lymphnet.org/
San Francisco-based non-profit organization founded to provide education and guidance to lymphedema patients, health care professionals and the general public.

Klippel-Trenaunay Syndrome Support Group
www.k-t.org
The Klippel-Trenaunay Group is a world-wide organization for individuals and families with children who have the Klippel-Trenaunay syndrome. It has a number of Canadian members. A Canadian K-T group has been formed which is incorporated as a charity, with nonprofit charitable status. For more information on the activities of this group see the Groups and Organizations section of this web site.

The Canadian Vascular Birthmark web site
www.canadianvascularbirthmarks.com/index.htm
The Canadian Vascular Birthmark web site is an Alberta based web site established to assist kids and their families who are affected by a birthmark. It provides information, support and resources.

CALM - Children Anguished with Lymphatic Malformations www.staycalm.org
CALM - Children Anguished with Lymphatic Malformations, was started in 1993 by the mother of a child with this rare and often misunderstood condition. Their goal is to help families and children born with lymphatic malformations.

The Cystic Hygroma & Hemangioma Online Support Group
www.cystichygroma.co.uk/
This is an on-line Irish support group whose aim is to offer help to children, parents and sufferers from the U.K. and around the world with these disabilities, to make contact. The web site provides guest books of e-mails from 1997 to now. Persons wishing to make contact with the group must send an e-mail.

Linfaweb
www.linfaweb.com/index2.html
A Spanish web site established to address treatment issues related to cystic hygroma.

The Hemangioma and Vascular Birthmarks Foundation
www.birthmark.org/support.htm
This web site has some good links to support groups for individuals who have K-T, Hemangioma and Vascular Birthmarks. Another useful birthmarks web site is: www.birthmarks.us

Lymphoedema Support Network
www.lymphoedema.org/lsn/default.htm
The Lymphoedema Support Network (LSN) is the UK's national patient support organization for lymphedema. LSN provides fact sheets for patients and healthcare professionals. Two self-help videos have been produced for patients. In addition, the Charity operates an information and support telephone line, produces a quarterly newsletter, maintains a web site, promotes the formation of self-help support groups around the country and campaigns at national level for improved standards of care. They are currently involved in the Lymphoedema Framework project and have assisted in the development of the Best Practice for the Management of Lymphoedema document.

Lymphoedema Ireland, formerly the Irish Lymphoedema Support Network (ILSN)
www.lymphireland.com
Lymphoedema Ireland is a support group which provides information, advice and support for sufferers of lymphedema. Its objectives are to campaign for the provision of treatment in Ireland for sufferers of lymphedema and advance the education of the public on the subject of lymphedema. Lymphoedema Ireland holds twice-yearly public meetings for members and their families. It also distributes information aimed at increasing public awareness of lymphedema.

Spanish Lymphedema Associations
There are four Lymphedema Associations in Spain. They work together to help and inform patients and the public on lymphedema, and to try change the present situation:

• Asociación de Enfermos de Linfedemas (ADELPRISE)
  Primarios y Secundarios
  FEDERACIÓN VICENTE ABREU
  C/ Pintor Vicente Abreu, 7
  01008 Vitoria-Gastéis
  Tel. 945 226 061 (Zuriñe)
  Tel. 630 618 103 (Casilda)
  www.portalsanitariobizkaia.org/ADELPRISEWEB.htm
  adelprise@yahoo.es
• Asociación Madrileña de Afectados de Linfedema (AMAL)
  Plaza Mariana Pineda, 3
  28038 MADRID
  Tel. 917 570 250
  Tel. 620 266 649
  Tel. 620 266 650 (Covadonga)
  Fax 914 788 760
  www.amal.org.es
• Asociación de Personas con Linfedemas en Aragón (ADPLA)
  C/Melilla nº 28 Bloque 3, 1º D
  50007 Zaragoza
  Tel. 650 835 345 (Maria José)
  adpla@cepymenet.com
• Asociación Gallega de Linfedema(AGL)
  C/ Nogueira, 21
  Apartado de Correos, 388
  36600 Vilagarcia de Arousa (Pontevedra)
  Tel. 618 307 562 (Juan)
  josymansl@terra.es

Israel Lymphedema Association
www.ial.org.il/asp/IAL-English.pdf
The Israeli Lymphedema Association was established as a non-profit organization in order to provide information and updates regarding lymphedema among patients and medical personnel, to distribute professional material, to establish support groups for patients throughout Israel, to advance rights of patients in health funds, hospitals, tax authorities and social security (national insurance), to organize meetings and conferences, to support research regarding lymphedema and to ensure liaison with similar associations in Israel and abroad. Its web site offers information in English, Russian and Hebrew.

Lymphedema People
www.lymphedemapeople.com
This is a web site established by Pat O'Connor, an individual with primary lymphedema who is also a cancer survivor, for and by people with lymphedema. Has some great links and lots of information including information for children and teens. E-mail: lymphedemapeople@aol.com

Turner's Syndrome Society of Canada
www.turnersyndrome.ca
Lymphedema is present in about 70% of those who have Turner Syndrome - a chromosomal disorder in which part or all of one of a woman's X chromosomes is missing.

National Congenital Pulmonary Lymphangiectasia (CPL) Foundation
Founded in 1995, the National CPL Foundation provides support and information for families and friends of persons with congenital pulmonary lymphangiectasia - a rare disorder which is seen more frequently in males. It occurs secondary to a developmental defect which results in obstructive, dilated lymphatics and subsequently "wet lungs". This organization funds research projects, provides information, referrals, phone support, pen pals and literature. Contact information: National CPL Foundation, 1202 S. Columbia Ave., Somerset, PA 15501-9387, Tel: (814) 445-9925 or (814) 445-3686, E-mail: vbrf@twd.net

Dr. Vodder School North America
www.vodderschool.com/
Provides training on specialized massage techniques known as manual lymph drainage.

eLymphNotes
www.eLymphNotes.org
An online magazine on issues related to lymphedema, published bi-annually by the Lymphedema Awareness Foundation in Florida. The 4th issue of the magazine has some useful information on infections associated with lymphedema.

www.littleleakers.com
Is a web site for people with Intestinal Lymphangiectasia. Intestinal Lymphangiectasia (IL) is an uncommon disorder of the gut. In IL the lymph channels in the lining of the gut become congested and burst, leading to loss of protein from the gut, which in turn leads to lower blood levels of proteins. Along with protein being lost in this way, other contents of the lymph channels are also lost: these include lymphocytes (leading to low white blood cell counts) and antibodies (immunoglobulins).

Ability OnLine Support Network
www.ablelink.org
250 Wincott Dr, RPO PO Box 18515
Etobicoke ON M9R 4C8
By Phone: 1-416-650-6207
Fax: 1-866-829-6780
Email: information@abilityonline.org
A free electronic support system for children and adolescents with disabilities or chronic illnesses and their families.

AboutFace International
www.aboutfaceinternational.org
Vascular malformations can result in facial differences. This terrific group works to help people address issues of self-esteem.

The Canadian Pain Coalition
www.canadianpaincoalition.ca
The Canadian Pain Coalition represents groups, organizations, and individuals acting on behalf of people who suffer from any and all kinds of pain - no matter how or why pain developed.

Autoimmune Mom
www.autoimmunemom.com/
Help for moms with autoimmune conditions

 Research Organizations

Lymphatic Research Foundation
www.lymphaticresearch.org
A non-profit corporation whose mission is to help identify, support and promote research into the causes, treatments, and potential cures for lymphedema and angiodysplasia disorders.

Lymphedema Family Study
www.pitt.edu/~genetics/lymph/
A genetic research project on inherited lymphededma at the University of Pittsburgh. Its goal is to identify genes responsible for primary lymphedema.

National Organization for Rare Disorders (NORD)
www.rarediseases.org
The National Organization for Rare Disorders (NORD) is an American-based federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases (which affect fewer than 200,000 people) and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. NORD produces a newsletter, The Orphan Disease Update, and administers the following databases:

• Rare Disease Database
• Organizational Database
• Orphan Drug Designation Database

The Global Alliance to Eliminate Lymphatic Filariasis
www.filariasis.org
The Global Alliance to Eliminate Lymphatic Filariasis is a world-wide organization which has risen to eliminate lymphatic filariasis or "elephantiasis". The Global Alliance to Eliminate Lymphatic Filariasis, for which WHO serves as the secretariat, is a free, non-restrictive partnership forum for the exchange of ideas and coordination of activities, with membership open to all interested parties.

The Canadian Coalition for Genetic Fairness: (CCGF/CCEG) is a group of 15 organizations dedicated to establishing protections against genetic discrimination for all Canadians. Their mission is to educate Canadians about genetic discrimination and to influence federal and provincial governments, and other relevant organizations, to create positive change.

The Genetic Alliance
www.geneticalliance.org
The Genetic Alliance is an international coalition representing 300 consumer and health organizations which works to protect the genetic rights of the public while encouraging genetic research which benefits individuals with genetic conditions and their families. The Genetic Alliance can be contacted through its web site or through its e-mail address at: info@geneticalliance.org.

The U.S. Office for Human Research Protections (OHRP)
www.hhs.gov/ohrp/
The U.S. Office for Human Research Protections (OHRP) provides leadership on human research subject protections and implements a program of compliance oversight for Department of Health and Human Services (HHS) regulations for the protection of human subjects.

The Dermatlas
www.dermatlas.com
The Dermatlas is an international collaborative project that enables health care professionals, parents, and patients to access high quality dermatology images on the World Wide Web. The Dermatlas also includes an online Dermatology Quiz at http://dermatlas.med.jhmi.edu/derm/quiz.cfm that allows trainees to test their diagnostic skills.
The Dermatlas is compiled, reviewed, scored and updated by physicians of the Johns Hopkins University.

WoundPedia
www.woundpedia.com
WoundPedia was developed as a complementary online tool to the World Union of Wound Healing Societies (WUWHS) meeting held in Toronto, June 4-8, 2008 to disseminate up-to-date, just in time evidence in a concise format. The information on WoundPedia is based on current health care evidence and goes through several stages of review. It has been developed by the WoundPedia expert health care professionals from the University of Toronto and other centres.

 Cancer Treatment Web Sites

The Canadian Medical Association Journal Clinical Practice Guidelines on breast cancer-related lymphedema.

The Canadian Breast Cancer Network (CBCN)
www.cbcn.ca/
A survivor-directed, national network of organizations and individuals which provides an independent voice for Canadians affected by breast cancer.

Willow
www.willow.org
Willow is a Canada-wide resource centre which provides information, support, and networking for women with breast cancer. It operates a toll-free line staffed by volunteers who have experienced breast cancer at: 1-888-778-3100.
Messages can be left 24 hours a day or you can e-mail questions to them at info@willow.org.

First Nations Breast Cancer Society
www.fnbreastcancer.bc.ca
E-mail: echoes@fnbreastcancer.bc.ca
The First Nations Breast Cancer Society (FNBCS) is a volunteer non-profit Native run organization whose mandate is to offer breast cancer education and support to First Nations women. FNBCS does not offer medical advice. Its volunteers are Native and Non-Native professionals, lay women and breast cancer survivors.

The Women's Health Matters Resource Database
www.womenshealthmatters.ca
The Women's Health Matters Resource Database is a searchable bilingual database of women's health resources for consumers and health professionals alike. It provides women with information about where to find women's health resources to support their health-care decision-making. Users can search the database using a variety of criteria to retrieve results that contain standardized descriptions of reviewed resources.

Ontario Breast Cancer Exchange Partnership (OBCEP)
www.obcep.ca
A coalition of organizations committed to ensuring that information about breast cancer is available to all people in Ontario.

Breast Cancer Action Ottawa:
http://www.bcaott.ca/bca-lymphedema/lymphedema.cfm
Are rolling out the program LYMPHEDEMA: Take Control. The three primary components of the project revolve around the development of an exercise module directly relevant to lymphedema management development of a train-the-trainer module that will allow for training to those in the health; fitness and wellness field on issues relevant to lymphedema; development of updated print materials for sharing with those at risk of developing lymphedema, as well as with breast health partners in the community. For further information on the project contact Marjorie Morrison of Breast Cancer Action at: (613)736-5921.

Breast Cancer Action Nova Scotia
http://bca.ns.ca
Online since 1996, this grassroots, volunteer-run site has one of the most active discussion forums on the internet (in excess of 2000 breast cancer related messages a month). Sadly, the discussion forum no longer exists.

MAMM Magazine
www.mamm.com
Interested in the latest information on breast cancer in a popular magazine format? Check out MAMM (magazine), 349 W. 12th Street, New York, NY 10014, USA. Has had a number of articles on lymphedema as well as other interesting features. To subscribe and find out more about the magazine visit MAMM's website or telephone 877-668-1800.

U.S. National Cancer Institute
http://www.cancer.gov/cancertopics/pdq/supportivecare/lymphedema/Patient
Good up-to-date information on lymphedema from a medical perspective.

The Mesothelioma Center is an up-to-date resource for information on absestos related cancers - ranging from diagnosis to mesothelioma treatment options.
http://www.cancer.gov/cancertopics/pdq/supportivecare/lymphedema/Patient
Good up-to-date information on lymphedema from a medical perspective.

 Government agencies

Health Canada
www.hc-sc.gc.ca
Health Canada is the federal government department responsible for helping the people of Canada maintain and improve their health. The Canadian Health Network--helps visitors find information by linking to 30,000 Health Canada documents through its web site.

The World Health Organization - Division of Control of Tropical Diseases
http://www.who.int/topics/elephantiasis_filarial/en/
This site provides information on lymphatic filariasis, which results from parasitic worms transmitted by mosquitoes. Lymphatic filariasis is endemic in at least 80 countries and affects over 170 million people or a quarter of the world's population. This site has excellent links to other tropical disease sites and information throughout the world.

Canadian Society for International Health - Travel Information (and treatment centres)
www.csih.org/en/travelhealth/index.asp
Travel health links from the Canadian Society for International Health (CSIH) which is committed to the promotion of international health and development.

Canadian Tropical Disease Specialists