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LIPODYSTROPHYUNITED.ORG

Welcome to Lipodystrophy United

Lipodystrophy United (LU) is an organization of committed individuals living strong with Lipodystrophy (LD). Our mission is to provide an interactive community, facilitating support and education for anyone affected by this rare disease. We serve as a resource and to increase awareness in the general population as well as the medical and insurance communities. We advocate and act as a catalyst for new patient diagnosis by assisting healthcare professionals in the understanding of Lipodystrophy t

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CONTACTS AT LIPODYSTROPHYUNITED.ORG

Lipodystrophy United

Andra Stratton

22 Fr●●●●● Road

Los●●●nas , New Mexico, 87031

US

1.50●●●●0034
ma●●●●●●●●●●@msn.com

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Lipodystrophy United

Andra Stratton

22 Fr●●●●● Road

Los●●●nas , New Mexico, 87031

US

1.50●●●●0034
ma●●●●●●●●●●@msn.com

View this contact

Lipodystrophy United

Andra Stratton

22 Fr●●●●● Road

Los●●●nas , New Mexico, 87031

US

1.50●●●●0034
ma●●●●●●●●●●@msn.com

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Lipodystrophy United (LU) is an organization of committed individuals living strong with Lipodystrophy (LD). Our mission is to provide an interactive community, facilitating support and education for anyone affected by this rare disease. We serve as a resource and to increase awareness in the general population as well as the medical and insurance communities. We advocate and act as a catalyst for new patient diagnosis by assisting healthcare professionals in the understanding of Lipodystrophy t
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Welcome to Lipodystrophy United | lipodystrophyunited.org Reviews

https://lipodystrophyunited.org

Lipodystrophy United (LU) is an organization of committed individuals living strong with Lipodystrophy (LD). Our mission is to provide an interactive community, facilitating support and education for anyone affected by this rare disease. We serve as a resource and to increase awareness in the general population as well as the medical and insurance communities. We advocate and act as a catalyst for new patient diagnosis by assisting healthcare professionals in the understanding of Lipodystrophy t

INTERNAL PAGES

lipodystrophyunited.org lipodystrophyunited.org
1

About Lipodystrophy

https://www.lipodystrophyunited.org/about-lipodystrophy.html

September 12, 2015. To Register on Global Lipodystrophy Patient Registry. On February 24, 2014, the United States Food and Drug Administration (FDA). Approved Myalept (Metreleptin for injection) as replacement therapy to treat the complications of Leptin deficiency, in addition to diet, in patients with Congenital Generalized or Acquired Generalized Lipodystrophy. To date, the FDA has NOT. Approved Myalept for patients with Partial Lipodystrophy (either Familial Partial or Acquired Partial Lipodystrophy).

2

News

https://www.lipodystrophyunited.org/news.html

June 25, 2015. What's New With LU? LU President, Andra Stratton, at a meeting with European Endocrinologists in Barcelona, Spain. Andra Stratton, President and Co-Founder of Lipodystrophy United, asks an important question at the Global Genes RARE Patient Advocacy Summit to Dr. Gayatri Tao, Director, Office of Orphan Products Development, Food and Drug Administration (FDA). Global Genes Video. September 25th and 26th, 2015. Global Genes RARE Patient Advocacy Summit 2015. March 31, 2015. February 28, 2015.

3

About Us

https://www.lipodystrophyunited.org/about-us.html

Community Advisors for Congenital Generalized Lipodystrophy. October 18, 2015. To Register on Global Lipodystrophy Patient Registry. With Familial Partial Lipodystrophy. With Familial Partial Lipodystrophy. Lipodystrophy United does not promote nor endorse any treatment, physician or lifestyle. The intent of any information posted on this website is to promote awareness and information.

4

Giving

https://www.lipodystrophyunited.org/giving.html

Our status as an IRS approved 501(c)3 Non-Profit organization is currently pending. Once our 501(c)3 Non-Profit status is active, you will be able to donate by clicking below. Thank you. Lipodystrophy United does not promote nor endorse any treatment, physician or lifestyle. The intent of any information posted on this website is to promote awareness and information.

5

Resources

https://www.lipodystrophyunited.org/resources.html

Last updated September 12, 2015. Under construction by LSM. To Register on Global Lipodystrophy Patient Registry. Lipodystrophy: Metabolic and Clinical Aspects. By Dr Abhimanyu Garg. Taking a Closer Look at Lipodystrophy. With Dr. Abhimanyu Garg and Nurse Elaine Cochran. Detection of Lipodystrophies, Clinical Approach. Includes pictures of various Lipodystrophies. European Consortium of Lipodystrophies. Body's Response to Low Leptin Levels. Not all, but many LD patients have low baseline Leptin levels).

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rareundiagnosed.org rareundiagnosed.org

"Congenital Generalized Lipodystrophy (AGPAT2) and Alani" by Rachel Daniels -

https://rareundiagnosed.org/rachel-daniels-congenital-generalized-lipodystrophy-agpat2

Recent Posts & St. RUN’s NBA Initiative: NBA Teams to Host Rare and Undiagnosed Families! March 3, 2017. Rachel Nielsen: Harmons Cooking School Experience from Make-A-Wish. March 3, 2017. 8220;Congenital Generalized Lipodystrophy (AGPAT2) and Alani” by Rachel Daniels. January 10, 2017 10:09 pm. Tags: Congenital Generalized Lipodystrophy (AGPAT2). Day we were overwhelmed with questions and fascinations as we detailed our concerns to all doctors and nursing staff that came in our room. The 2. Required fiel...

ldconnect.patientcrossroads.org ldconnect.patientcrossroads.org

LD Connect Registry

https://ldconnect.patientcrossroads.org/index.php

Data Access and Publication Policy. Research Studies and Trials. By registering, your information will be used to move forward research and clinical trials that could lead to future treatments and cures for all types of Lipodystrophy. Get information on the latest registry-related news, including ongoing efforts to advance research and increase the quality of life of people living with Lipodystrophy. Download the Registry Brochure.

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Povezave | Redke bolezni

http://www.redkebolezni.si/splosno/povezave

Center za mendelsko genomiko. Center za nediagnosticirane redke bolezni. Poročilo o aktivnostih na področju redkih bolezni v Sloveniji in drugod po Evropi. Internetne povezave z drugimi nacionalnimi spletnimi stranmi za redke bolezni. Hrvaško društvo za redke bolezni (Hrvatsko društvo za rijedke bolesti). Italijanska kontaktna spletna stran za redke bolezni. Danska kontaktna spletna stran za redke bolezni. Norveška kontaktna spletna stran za redke bolezni. Finska kontaktna spletna stran za redke bolezni.

metabolic-disorders.blueprintgenetics.com metabolic-disorders.blueprintgenetics.com

Genetic testing for inborn error of metabolism

http://metabolic-disorders.blueprintgenetics.com/panels/comprehensive-metabolism-panel

Blueprint Genetics - Metabolic Disorders. Ear Nose and Throat. Whole Genome Del/Dup (CNV). Our Sequence Analysis is based on a proprietary targeted sequencing method OS-Seq and offers panels targeted for genes associated with certain phenotypes. A standard way to analyze NGS data for finding the genetic cause for Mendelian disorders. Results in 21 days. Results in 3-4 weeks. We do not offer a maternal cell contamination (MCC) test at the moment. We offer prenatal testing only for cases where the ...Click...

ldconnect.patientcrossroads.org ldconnect.patientcrossroads.org

Family Support Resources

https://ldconnect.patientcrossroads.org/en/resources.html

Data Access and Publication Policy. Research Studies and Trials. Support and Advocacy Groups. Is an global non-profit dedicated to increasing awareness and supporting the lipodystrophy community. The Global Genes Project. Is a leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities. Asociación Española de Lipodistrofias. Research and Clinical Trial Resources.

mmoc.med.umich.edu mmoc.med.umich.edu

NORC: Nutrition Obesity Research Center at the University of Michigan: Enrichment: Lipodystrophy 2014

http://mmoc.med.umich.edu/Lipodystrophy2014.php

Integrative Biostatistics and Informatics. It is extremely important that our grant is cited in all publications resulting from the use of NORC services. Our productivity and effectiveness as a Center is measured in part by the citation of the grant in published work. Please use the following acknowledgement in your publications:. This work utilized Core Services supported by grant DK089503 of. To the University of Michigan. Lipodystrophy in 2014: Leptin and Beyond. October 17th through 19th, 2014. We ho...

cmdir.org cmdir.org

PatientCrossroads CMD

https://www.cmdir.org/index.php

Bio Bank and Tissue Repository. Registered affected individuals are required for:. Government intervention and funding. By registering you will also receive:. Notice of available clinical trials that apply to your registered profile. Notice of available therapies that apply to your registered profile when they become available. The Congenital Muscle Disease International Registry ( CMDIR. We will not be successful in finding a treatment or cure unless we know. Who the affected individuals are,. The follo...

cardiometabolichealth.org cardiometabolichealth.org

Association Partners

http://www.cardiometabolichealth.org/testimonials.asp

Best of the CMHC Regional Conferences. Best of CMHC Regional Conferences. The Cardiometabolic Health Congress gratefully acknowledges our Association Partners. For more information on Association partner opportunities, please email info@cardiometabolichealth.org. Or call 877.571.4700. Members of CMHC Association Partners Receive a $100 Discount on Registration for the 10th Annual CMHC! American College of Cardiology. American Society of Bariatric Physicians. Alliance of Cardiovascular Professionals.

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Welcome to Lipodystrophy Support - Home

Familial Partial Lipodystrophy (FPLD). Diabetes and Insulin Resistance. You are here: Home. Welcome to Lipodystrophy.co.uk. This website provides information about Lipodystrophy, support to those with the condition, family and friends. Main Entry: li·po·dys·tro·phy. Pronunciation: “lip-O-’dis-tr&-fE, “. Inflected Form(s): plural -phies. A disorder of fat metabolism especially involving loss of fat from or deposition of fat in tiss. Inherited lipodystrophies are caused by mutations (alterations or blips) ...

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Home Page

Is a medical condition characterized by abnormal or degenerative conditions of the body's fat (adipose) tissue. You're a lone wolf. A renegade. We get you. That's why we have so many individual workout options available. Wanna throw the kettlebells around? No problem. Jonesing for a quick 5-miler on the treadmill? You'll always find a free one. You chart your fitness course. We'll be the compass. Make it a group thing. Getting (and staying) fit can be fun. Don't waste one minute more! For a free tour!

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Welcome to Lipodystrophy United

Advocating for your Health. Educational and Support Videos. What's New with LU. Advocating for your Health. Educational and Support Videos. What's New with LU. Lipodystrophy United Mission Statement. A Selective Loss of Body Fat Disorder. Lipodystrophy is one of 7,000 rare diseases in the U.S. identified. By the National Institutes of Health. Rare diseases affect 1 in 10 people in the U.S., that's 30 million people. 95% of rare diseases have no FDA approved treatment. LipodystrophyUnited.org is a sit...

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Lipoedeem Foto's / Pictures. Bent u arts, therapeut? Dr Karen Herbst about Lipedema. De dokter en de wet. Assertief naar de dokter. Chronisch ziek zijn en werk. Chronisch ziek zijn en werk. Tips voor op de werkvloer. Boek aanbevelingen / filmpjes. Handboek Voeding en beweging. Handboek voeding en beweging. Double click to edit. Welkom op de eerste en grootste site over de ziekte. LIPOEDEEM - LIPEDEMA - LIPOEDEMA. Fijn dat u deze site heeft gevonden. Links ziet u het menu. Klik in menu op Contact). Om ken...

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4b Quadrivas Therapie ervaringen. 5 Compressie en meer. 4b Quadrivas Therapie ervaringen. 5 Compressie en meer. Deze website bevat informatie die niet wetenschappelijk is onderbouwd, maar die positief is gebleken voor vele vrouwen met lipoedeem of lipo-lymfoedeem. Het toepassen van de tips zou kunnen leiden tot een leven met minder pijn en een menswaardiger bestaan. Klik op foto of hier om verder te gaan.

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Lipoedeemdag

Op de hoogte blijven. Art and Beauty Mag 1. Art and Beauty Mag 2. De inschrijving van de lipoedeemdaag 2015 is geopend! Welkom op de website van Stichting Nederlandse Lipoedeemdag. Welkom op de geheel vernieuwde website van Stichting Nederlandse Lipoedeemdag. De Stichting Nederlandse Lipoedeemdag is een initiatief van Brigitta Noordam-Custers (lipoedeempatiënte) en huidtherapeuten Jacolien Plomp en Suze van Beusekom. Namens de Stichting Nederlandse Lipoedeemdag,. Jacolien Plomp, huid- en oedeemtherapeut.