Lymphedema Organizations Directory

List of LymphedemaOrganizations in the UnitedStates.

Theinformation was correct as of the date provided to us. If you know of anychanges, corrections, please feel free to contact me direct. We have also listedsites for related medical conditions.

lymphedemapeople@aol.com

May21, 2008

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Lighthouse Lymphedema Network

Georgia's own family forlymphedema. Our president, Joan White received (TV Channel) 11 AliveCommunity Service Award.

Lighthouse LymphedemaNetwork (LLN) Founder and Current Director

11 AliveCommunity Service Award Winner - JoanWhite

Formal program was atthe Hyatt Regency, Atlanta, GA, April 3, 2008

http://www.lymphedemalighthouse.org/

About Us

http://www.lymphedemalighthouse.org/aboutus

Calender

http://www.lymphedemalighthouse.org/calendarofevents

Newsletter

http://www.lymphedemalighthouse.org/aboutus

Certified Therapists

http://www.lymphedemalighthouse.org/article19381.htm

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National Lymphedema Network

http://www.lymphnet.org/

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NLNPosition Papers

Trainingof Lymphedema Therapists

AirTravel

Exercise

RiskReduction Practices

Treatmentof Lymphedema

http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm

NLN Manual Lymph Drainage Therapists

http://www.lymphnet.org/resourceGuide/manualDrainage.htm

NLN Lymphedema Treatment Centers

http://www.lymphnet.org/resourceGuide/treatmentCenters.htm

NLN Lymphedema DME, bandage, garments suppliers

http://www.lymphnet.org/resourceGuide/suppliers.htm

Links to Related Sites

http://www.lymphnet.org/usefulLinks/usefulLinks.htm

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Lymphatic Research Foundation

http://www.lymphaticresearch.org/main.php?content=home

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North American Vodder Association of LymphaticTherapy

http://www.navalt.org/

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Circle of Hope Lymphedema Foundation

http://lymphedemacircleofhope.org

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AmericanSociety of Lymphology

http://www.lymphology.org/

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Greater Boston Lymphedema Network

http://www.gbln.org/

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Maine Lymphedema Network

http://www.mainelymphnet.org/

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International Society of Lymphology

http://www.u.arizona.edu/~witte/ISL.htm

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MaineLymphedema Network

http://www.mainelymphnet.org/

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GreaterBoston Lymphedema Network

http://www.gbln.org/

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WestVirginia Lymphedema Network

http://www.wvlymph.org/

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VenturaLymphedema Group

http://venturalymphedema.org/

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LymphedemaFamily Study

Universityof Pittsburg

http://www.pitt.edu/~genetics/lymph/

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NYCLymphedema Support and Information Group

http://www.nyclymph.freeservers.com/

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LymphedemaInformation and Resources:

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Academy of Lymphatic Studies

Schoolof Lymphedema Therapy Certification

http://www.acols.com/

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KloseTraining and Consulting

Schoolof Lymphedema Therapy Certification

http://www.klosetraining.com/

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Norton School of LymphaticTherapy

Schoolof Lymphedema Therapy Certification

http://www.nortonschool.com/

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Coastto Coast School of Lymphedema Management

Schoolof Lymphedema Therapy Certification

http://www.lymphedemamanagement.com/

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ComplexLymphatic Therapy Courses

Casley-SmithMethod

http://casley-smith-lymphedema-courses.org/

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TheUpledger Institute

http://www.upledger.com/

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InternationalLymphedema Organizations:

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Lymphovenous Canada

http://www.lymphovenous-canada.ca/

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CancerBACUP - UK

UK's leading cancer information service

http://www.cancerbacup.org.uk/Home

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An Arm and A Leg

http://www.anarmandaleg.co.uk/

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UKLymph

http://www.uklymph.com/

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Lymphoedema Support Network

http://www.lymphoedema.org/lsn/

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MLD-UK

A professional association of manual lymphatic drainage practitioners.

http://www.mlduk.org.uk/

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LymphoedemaIreland

http://www.lymphireland.com/

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MLD Ireland

http://www.mldireland.com/

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The Lymphedema Association of Quebec

www.infolympho.ca

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TheLymphovenous Association of Ontario

http://www.lymphontario.org/

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Alberta Lymphedema Association

http://www.albertalymphedema.com/

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British Lymphology Society

http://www.lymphoedema.org/bls/index.htm

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Lymphoedema Association of Australia

http://www.lymphoedema.org.au/

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TheLymphoedema Association of Victoria Inc. - Australia

http://www.lav.org.au/

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Lymphoedema Association ofQueensland

http://www.lymphqld.org/

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IsrealLymphedema Association

http://www.ial.org.il/

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CanadianBreast Cancer Network

http://www.cbcn.ca/en/?

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OtherImportant Links and Resources:

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Breast Cancer.org

http://www.breastcancer.org/

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AmericanCancer Society

http://www.cancer.org/docroot/home/index.asp

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TheLeukemia & Lymphoma Society

http://www.leukemia-lymphoma.org/hm_lls

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The Breast Care Site

http://www.thebreastcaresite.com/tbcs/index.htm

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Breast Cancer Association of Nova Scotia

BCANS provides online support and chat through its international breast cancercommunity support forums. The site also includes biography pages, usergalleries, a cancer glossary, information, links resources and much, much more.

http://bca.ns.ca

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HormoneRefractory Prostate Cancer

Importantsite for men. Has extensive info on prostate cancer and an excellentlymphedema page.

http://www.hrpca.org/

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CALM - Children Anguished with Lymphatic Malformations

CALM - Children Anguished with Lymphatic Malformations, was started in 1993 bythe mother of a child with this rare and often misunderstood condition. Theirgoal is to help families and children born with lymphatic malformations

http://www.staycalm.org/

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National Congenital Pulmonary Lymphangiectasia (CPL) Foundation

Founded in 1995, the National CPL Foundation provides support and informationfor families and friends of persons with congenital pulmonary lymphangiectasia -a rare disorder which is seen more frequently in males. It occurs secondary to adevelopmental defect which results in obstructive, dilated lymphatics andsubsequently "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

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National Organization for Rare Disorders (NORD)

The National Organization for Rare Disorders (NORD) is an American-basedfederation of voluntary health organizations dedicated to helping people withrare "orphan" diseases (which affect fewer than 200,000 people) andassisting the organizations that serve them. NORD is committed to theidentification, treatment, and cure of rare disorders through programs ofeducation, advocacy, research, and service.
NORD produces a newsletter, The Orphan Disease Update, and administers thefollowing databases:

Rare Disease Database
Organizational Database
Orphan Drug Designation Database
NORD can be reached through its e-mail address at:
orphan@rarediseases.org or bytelephone at (203) 746-6518 Fax: (203) 746-6481 Toll-Free: 800-999-6673

www.rarediseases.org

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Canadian Organization for Rare Disorders

email: office@cord.ca.

www.cord.ca/

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The Global Alliance to Eliminate Lymphatic Filariasis

The Global Alliance to Eliminate Lymphatic Filariasis is a world-wideorganization 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 partnershipforum for the exchange of ideas and coordination of activities, with membershipopen to all interested parties

www.filariasis.org

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The Genetic Alliance

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

http://www.geneticalliance.org/

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The Klippel-Trenaunay Support Group of Canada

www.k-t.org

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The Cystic Hygroma & Hemangioma Online Support GroupUK

www.cystichygroma.co.uk/

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The Hemangioma and Vascular Birthmarks Foundation

http://www.birthmark.org/

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AboutFace International

In 1985, AboutFace began connecting individuals withsimilar experiences of living with facial difference. It was the start ofsomething special and we soon realized that all people really need is a chanceto share, be heard and valued for their self worth.

www.aboutfaceinternational.org

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Canadian RSD Network

http://www.canadianrsd.com/

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RSD UK Alliance

http://www.rsdalert.co.uk/index4.htm

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Reflex Sympathetic Dystrophy Network

http://www.rsds.org/

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Turner Syndrome Society USA

http://www.turner-syndrome-us.org/

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TheNoonan Syndrome Support Group

http://www.noonansyndrome.org/

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The Lymphangiomatosis Foundation

http://www.lymphangiomatosis.org/

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LittleLeakers

LymphangiectasiaSupport and Forum

http://www.littleleakers.com/

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KlinefelterSyndrome Support Group

http://klinefeltersyndrome.org/

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SupportOrganization for Trisomy 18, 13 and Related Disorders

http://www.trisomy.org/index.php

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FabryCommunity

Fabry disease is one ofseveral genetically inherited diseases called lysosomal storage disorders. Itcauses a wide range of signs and symptoms that can range from mild to severe andlife threatening. This site connects the Fabry community to information aboutthe causes, diagnosis and management of Fabry disease. The site also providessupport to patients, families, and healthcare providers.

http://www.fabrycommunity.com/global/fc_p_hp_homepage.asp

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Neurofibromatosis,Inc.

NF, Inc.is a national, tax-exempt, charitable organization whose mission is to create anetwork of support for those affected by NF, through education, advocacy, andcoalitions, and by supporting research for treatments and a cure. We encourageyou to explore our site, check back often, and contactus if you need further information.

http://www.nfinc.org/

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Lymphangioleiomyomatosis (LAM)Foundation

http://www.thelamfoundation.org/

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Hidradenitis Suppurativa Foundation, Inc.

The Hidradenitis Suppurativa Foundation, Inc. (HSF)is a 501(c)(3) nonprofit public benefit corporation dedicated to improving thequality of life and quality of care for individuals and families affected byHidradenitis Suppurativa (HS).

http://www.hs-foundation.org/

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HSUSA

Hidradenitis Suppurativa (HS), also known as 'Acne Inversa',is a physically, psychologically, and socially disabling disease affectinginverse areas of the body (those places where there is skin-to-skin contact -armpits, groin, breasts, etc.), and where apocrine glands and hair follicles arefound. It is non-contagious and recurrent; typically manifesting as aprogression from single boil-like, pus-filled abscesses, or hard sebaceouslumps, to painful, deep-seated, often inflamed clusters of lesions with chronicseepage (suppuration --- hence the name) involving significant scarring.

http://www.hs-usa.org/hidradenitis_suppurativa.htm

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CanadianVascular Birthmarks

http://www.canadianvascularbirthmarks.com/malformation.htm

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Joinus as we work for lymphedema patients everywehere:

Advocatesfor Lymphedema

Dedicated to be an advocacy group forlymphedema patients. Working towards education, legal reform, changing insurancepractices, promoting research, reaching for a cure.

http://health.groups.yahoo.com/group/AdvocatesforLymphedema/

Subscribe:

AdvocatesforLymphedema-subscribe@yahoogroups.com

Pat O'Connor

Lymphedema People / Advocates forLymphedema

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For information aboutLymphedema

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema\

For Information aboutLymphedema Complications

http://www.lymphedemapeople.com/wiki/doku.php?id=complications_of_lymphedema

For Lymphedema PersonalStories

http://www.lymphedemapeople.com/phpBB2/viewforum.php?f=3

For information about Howto Treat a Lymphedema Wound

http://www.lymphedemapeople.com/wiki/doku.php?id=how_to_treat_a_lymphedema_wound

For information aboutLymphedema Treatment

http://www.lymphedemapeople.com/wiki/doku.php?id=treatment

For information aboutExercises for Lymphedema

http://www.lymphedemapeople.com/wiki/doku.php?id=exercises_for_lymphedema

For information on InfectionsAssociated with Lymphedema

http://www.lymphedemapeople.com/wiki/doku.php?id=infections_associated_with_lymphedema

For information on Lymphedema inChildren

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_in_children

Lymphedema Glossary

http://www.lymphedemapeople.com/wiki/doku.php?id=glossary:listing

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Lymphedema People - SupportGroups

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Childrenwith Lymphedema

The time has come for families, parents, caregivers to have a support group oftheir own. Support group for parents, families and caregivers of chilren withlymphedema. Sharing information on coping, diagnosis, treatment and prognosis.Sponsored by Lymphedema People.

http://health.groups.yahoo.com/group/childrenwithlymphedema/

Subscribe: childrenwithlymphedema-subscribe@yahoogroups.com

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LipedemaLipodema Lipoedema

No matter how you spell it, this is another very little understood and totallyfrustrating conditions out there. This will be a support group for thosesuffering with lipedema/lipodema. A place for information, sharing experiences,exploring treatment options and coping.

Come join, be a part of the family!

http://health.groups.yahoo.com/group/lipedema_lipodema_lipoedema/?yguid=209645515

Subscribe: lipedema_lipodema_lipoedema-subscribe@yahoogroups.com

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Menwith Lymphedema

If you are aman with lymphedema; a man with a loved one with lymphedema who you are tryingto help and understand come join us and discover what it is to be the masterinstead of the sufferer of lymphedema.

http://health.groups.yahoo.com/group/menwithlymphedema/

Subscribe: menwithlymphedema-subscribe@yahoogroups.com

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AllAbout Lymphangiectasia

Support group for parents, patients, children who suffer from all forms oflymphangiectasia. This condition is caused by dilation of the lymphatics. It canaffect the intestinal tract, lungs and other critical body areas.

http://health.groups.yahoo.com/group/allaboutlymphangiectasia/

Subscribe: allaboutlymphangiectasia-subscribe@yahoogroups.com

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LymphaticDisorders Support Group @ Yahoo Groups

While we have a numberof support groups for lymphedema... there is nothing out there for otherlymphatic disorders. Because we have one of the most comprehensive informationsites on all lymphatic disorders, I thought perhaps, it is time that one beoffered.

DISCRIPTION

Information and support for rare and unusual disorders affecting the lymphsystem. Includes lymphangiomas, lymphatic malformations, telangiectasia,hennekam's syndrome, distichiasis, Figueroa
syndrome, ptosis syndrome, plus many more. Extensive database of informationavailable through sister site Lymphedema People.

http://health.groups.yahoo.com/group/lymphaticdisorders/

Subscribe: lymphaticdisorders-subscribe@yahoogroups.com

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AllAbout Lymphedema

For our Google fans, we have justcreated this online support group in Google Groups:

Homepage: http://groups-beta.google.com/group/All-About-Lymphedema

Group email: All-About-Lymphedema@googlegroups.com

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Lymphedema Friends

http://groups.aol.com/lymphedemafriend

If you an AOL fan and looking for a support group in AOLGroups, come and join us there.

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LymphedemaPeople New Wiki Pages

Have you seen our new “Wiki”pages yet? Listed below are just asample of the more than 140 pages now listed in our Wiki section. We are alsoworking on hundred more. Come andtake a stroll!

LymphedemaGlossary

http://www.lymphedemapeople.com/wiki/doku.php?id=glossary:listing

Lymphedema

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema

Arm Lymphedema

http://www.lymphedemapeople.com/wiki/doku.php?id=arm_lymphedema

Leg Lymphedema

http://www.lymphedemapeople.com/wiki/doku.php?id=leg_lymphedema

Acute Lymphedema

http://www.lymphedemapeople.com/wiki/doku.php?id=acute_lymphedema

The Lymphedema Diet

http://www.lymphedemapeople.com/wiki/doku.php?id=the_lymphedema_diet