Siti affidabili e associazioni di pazienti

La LIO Lipedema Italia Onlus invita i pazienti ad informarsi, anche sfruttando la traduzione automatica (anche di documenti), su queste fonti di informazione, ritenendole affidabili, non settoriali e onnicomprensive e a fare riferimento ai propri medici e professionisti per chiarimenti.

Fat Disorders Resource Society (FDRS), formerly research society, is dedicated to improving the quality of life for all people affected by adipose tissue disorders by supporting research, education, advocacy, and collaboration. The FDRS was founded in 2009 by Sue Grimshaw, Susan Smith and Carole Reed to promote research, increase public awareness, and provide information and resources for individuals with fat disorders. During the first year, FDRS set up a website and held an informal gathering which is now referred to as the First Annual FDRS Midwest Conference. The second conference was held in 2010 where Dr. Karen Herbst, one of the only fat disorder specialists in the United States, addressed a larger gathering of Dercum’s disease and lipedema patients. The organization was very active with networking, fundraising, and blogging and had a very active web presence. By the 2011 conference, the organization had made great advances in networking and dissemination of information. The following year presented several setbacks due in part to quick growth, including website problems and an increase in volunteer workload. At the end of 2013, Felicitie Daftuar became President and the board reorganized. Since then, FDRS continues to host successful conferences, fund research, and disseminate information through the website, social media, and YouTube.

Lipedema Foundation is a US 501c3 non-profit and 509a private family foundation. Mission: To Define, Diagnose and Develop Treatments for Lipedema. Strategy: The Lipedema Foundation supports collaborative research that addresses the basic biology, genetics, and epidemiology of lipedema. Values: Transparency – the Foundation strives for an open and active discussion with and amongst grantees. Collaboration – the Foundation stresses the importance of collaborative research. Community – the Foundation favors research efforts that will build and leverage a patient-researcher community.

If you struggle with fat, especially disproportionately distributed on your thighs, butt, hips, maybe upper arms, and you’ve efforted to reduce to no avail, you might have a fat disorder called lipedema (lipoedema in Europe). This site is dedicated to raising awareness and offering education about this little-known and generally misdiagnosed disease. We hope you find answers here. I’m Catherine Seo, PhD. I founded Lipedema Simplifed LLC in 2013 to try and find answers. It’s been an amazing and miraculous journey that I am profoundly grateful for. This website is about my personal journey and discovery with lipedema…

 

A collaborative partnership between the Friedman Center for Lymphedema Research & Treatment at The Center for Advanced Medicine at Northwell Health and Lipedema Simplified, LLC, the Lipedema Project is a comprehensive transmedia program working to increase awareness and provide education, research and treatment for lipedema.

 

Lipedema University provides videos, audio podcasts, transcriptions of interviews and presentations, and online classes of many of the top clinicians, surgeons, therapists, advocates, scientists and researchers worldwide. Additionally, you will find many stories from women who have lipedema, the Lipedema Ladies, sharing their own process of discovery and treatment.

Our purpose is to provide relevant information and compassionate support to educate and raise awareness for those who have or think they might have lipedema and for providers.

 

Program Complete
The TREAT Program is complete. This website is scheduled to be archived and disabled by July 1, 2020. Please contact karenherbst@email.arizona.edu with any concerns or questions.

The TREAT Program (Treatment, Research & Education of Adipose Tissue Program) is intended to improve imaging and phenotyping of fat tissues and develop educational tools to help physicians better recognize, diagnose and treat patients. We Welcome People with Lipedema and Other SAT Disorders. Through education, our undergraduate students, medical students, residents, fellows, staff, and faculty, provide a welcoming environment where lipedema and other SAT disorders are known. We are focused on lipedema SAT to find out what makes lipedema SAT different – what makes it resist weight loss from therapies including bariatric surgery, anorexic diets and over-exercise, what makes it hurt, and why does it get out of control causing lymphedema in some women and not others. We learn from our patients and research participants as they learn from us. We value input and ideas as we know that no one has better insight about SAT disorders than someone living with a SAT disorder.

Karen Herbst MD, PhD website. She is a board-certified endocrinologist who has been in practice for over 15 years. She graduated from Rush University with a medical degree in 1996 and completed her residency training and endocrinology fellowship at the University of Washington. She is currently an Associate Professor at the University of Arizona and Director of the TREAT Program. Her main interests are in fat disorders including lipedema and Dercum’s disease and she has been advocating for these disorders since 2005. Dr. Herbst is one of the founders of the Fat Disorders Research Society.

Beau Dunn is the official Spokeswomen and Founder of Cure Lipedema. Diagnosed in early 2011, she quickly became advocate for finding a cure for Lipedema while also spreading awareness.

Dr. Karen HerbstI am a board certified Endocrinologist by training and have always been interested in fat – why do daughters have fat just where their mothers do, and why do men develop large abdomens and skinny arms and legs as they age. While training at the University of Washington in Seattle, I was introduced to patients with familial partial lipodystrophy and Madelung’s disease (multiple symmetric lipomatosis; MSL). I was fortunate to work with one patient with MSL in Los Angeles and have come to know more as I continue working in San Diego. While conversing with the owner of the “About Madelung’s Disease” website, she told me to look into Dercum’s Disease. Finding out about lipedema was next. Since that time, I have seen many people with Dercum’s disease, familial multiple lipomatosis (FML), Madelung’s disease and lipedema (and lipo-lymphedema) from all over the world. While much research remains unpublished, I want to share my understanding of these disorders and provide suggestions for treatment so that you and your healthcare provider can help you live a better life.

I wish you health and pain-free days.

SIncerely,
Karen L. Herbst, PhD, MD

Lipoedema UK was founded in 2012 by women with Lipoedema, and the Lymphoedema Service at St George’s Hospital in London. Our Patrons are the UK’s leading Lipoedema expert, Professor Peter M Mortimer MD. FRCP. Professor of Lympho-vascular and Dermatalogical Medicine to St George’s and Royal Marsden Hospitals and Dr Kristiana Gordon MBBS, MRCP, CLT St George’s Hospital, London. Our focus is to educate doctors, health professionals and the public about Lipoedema and its symptoms, so it may be diagnosed and treated earlier.

Talk Lipoedema (SCIO) is a registered charity in Scotland (SC045490), supporting you on your journey with Lipoedema. Talk Lipoedema’s aim is to support and empower those affected by Lipoedema. By giving you, your family and carers the knowledge on how to manage the condition and its symptoms. 

ADALIPE è la prima associazione focalizzata esclusivamente sul lipedema in Spagna.

È nata alla fine del 2016 con entusiasmo e vocazione al servizio per aiutare tutte quelle donne che vivono con il lipedema e che potrebbero non trovare risposte alle loro molteplici domande.

È composta da un gruppo di persone affette da questa patologia ed è costituita da pazienti, parenti e persone sensibili alla causa.

I nostri obiettivi sono chiari:

Diffondere la conoscenza della malattia e aiutare i pazienti.
Riconoscimento del lipedema come malattia in Spagna.
Ottienere una diagnosi corretta e precoce.
Se pensi di avere un lipedema, possiamo aiutarti a capire la tua malattia, darti linee guida per ottenere una diagnosi e mostrarti l’importanza di unirti alla nostra lotta.

Lipedema Network Canada is located in Ontario (Canada). Mission: to spread awareness about Lipedema to the medical profession across Canada and to educate the general public about this misunderstood disease, and to help women with Lipedema get the support they need for a proper diagnosis and care. Lipedema Network Canada was founded by Sherry Simoes who suffers from Lipedema in an attempt to bring awareness to this misunderstood disease across Canada and to support women who also suffer. Sherry was diagnosed with Lipedema in 2013 and is in the early stages of Stage 3. She suffered for over 10 years before a diagnosis was made and is hoping that by spreading awareness across Canada that other woman will not have to suffer as long as she did. Sherry works from the family farm in Ilderton, Ontario where she enjoys her horses and other farm animals.

Lipoedema Australia is a registered charity which was founded by members of a Facebook group dedicated to Lipoedema. An initial association was formed called Lipoedema Australia Support Society Inc (LASS), which has since evolved into Lipoedema Australia. Lipoedema Australia is a volunteer based association which: Raises awareness of Lipoedema, Advocates for and support women with Lipoedema, Provides a safe, supportive and educational resource through a closed Facebook group, Provides information and resources for ongoing management of Lipoedema. The committee members of Lipoedema Australia are volunteers who suffer with Lipoedema – and are not medical professionals. We offer support and information via our Facebook group, website, annual conferences and other public and private events.

Svenska Ödemförbundet. The Swedish Association – SÖF – is the Swedish patient and interest association for people with: Primary and secondary lymphedema, Lipoedema, Dercum’s disease, Venous edema, Vascular Anomalies (Vascular Defects), Immobilitetsödem, Related complications. The Swedish Edema Association was established in 1999 and is today a nationwide association that works at local, national and international level to improve the care of patients with chronic edema. We work intensively for: a fairly equal care in Sweden regardless of diagnosis and place of residence to strengthen the patient’s rights, that the lymphatic system is noticed and that more research is done on this topic so that we can get e.g. better patient education and new treatment methods, that we should learn to live with our illness and experience an optimal person-centered diagnosis as well as care based on the patient’s needs

The Swedish Edema Association is constantly striving to inform and influence caregivers and decision-makers as it is still lacking in both knowledge and knowledge of chronic edema. One of the goals is to influence the local community to get help in your particular county / region and therefore great effort is put into starting up local associations around Sweden. In October 2018, SÖF has local associations in Skåne, Stockholm, Uppsala, Västra Götaland and Örebro. SÖF is constantly working to increase the number of members as we have a greater opportunity to influence the more we are. You can be a member as a patient, support member, healthcare staff or as an entrepreneur / organization. No matter which membership you choose, you are invited to a variety of events that SÖF organizes each year and you always have a supportive and helpful hand when seeking care.

Welcome to Lipedema Alberta. Our goal is to educate and advocate in support of the up to 1 in 11 women who suffer from a disease called Lipedema. Sandra Hall is co-founder.  “What? My fat isn’t supposed to hurt?!”. Sandra is a woman living with lipedema who has had surgical intervention via Dr. Josef Stutz

 

Association Maladie du Lipœdème FranceThe AMLF is a non-profit association law 1901 created in November 2019 in order to intervene with people with lipoedema by providing listening, support and sharing information on the pathology. Missions: The AMLF is implementing actions to be able to obtain recognition of the disease in France. In particular, making contact with health organizations, health professionals and elected officials. The objective is to make as many people as possible aware of the existence of this disease so that patients can obtain better care, follow-up and adequate support. Social media: The Association is present on: Instagram: AssoLipoedemeFrance. Facebook: Association Maladie du Lipoedeme France

 

NLNet Nederlands Network voor Lymfoedeem and LipoedeemDutch Network for Lymphedema and Lipedema. NLNet and the people behind it. On January 31, 2006, the national patient network NLNet was established for everyone who deals with lymphedema and lipedema. The initiators have been the Breast Cancer Association of the Netherlands (BVN), the Olive Foundation, individual patients, the Dutch Association for Physiotherapy within Lymphology (NVFL), the Dutch Association of Skin Therapists (NVH), the Foundation Lymphology Center of the Netherlands (SLCN) and a number of representatives from the business.

Disclaimer: La LIO ha messo al primo posto della sua mission il ripristino del diritto all’informazione di tutti i pazienti affetti da Lipedema e di chi sospetta di esserlo dopo aver riscontrato che nel nostro paese l’informazione sulla patologia è farraginosa o viziata da punti di vista pregiudizievoli e discrezionali a seconda del medico. In molti diffondono informazioni imprecise e non pertinenti, in particolar modo sul web. La LIO promuove un approccio rigorosamente medicale alla patologia. Dissuade dal fare ricorso al web nella ricerca di soluzioni terapeutiche dai da te e indirizza da professionisti qualificati per diagnosi e trattamento del lipedema. Consapevole che il web resta purtroppo la principale fonte d’informazione al paziente, con tutti i limiti e i pericoli che questo comporta, la LIO aiuta il paziente a orientarsi nel complesso mondo dell’informazione telematica e social, nella ricerca di fonti autorevoli e attendibili. 

Siamo impegnate in prima linea anche per aiutare i professionisti a reperire informazioni da fonti autorevoli e verificate e i pazienti nella fruizione delle stesse. 
Le principali fonti di informazione, riconosciute in tutto il mondo, sono in lingua inglese (o in lingua tedesca). Comprendiamo perfettamente che questo pone un problema di gap linguistico con l’informazione proveniente dall’estero e che taglia fuori la platea di pazienti italiani che non sono in grado di leggere in queste lingue dalle più importanti notizie in materia di ricerca e pratica clinica aggiornata sulla patologia e che le associazioni internazionali producono a beneficio dei pazienti. Colmare questa defezione è uno dei primi impegni assunti dall’associazione. Forniamo ai nostri pazienti strumenti di traduzione assistita e li stimoliamo al confronto consapevole con i professionisti a cui li indirizziamo. La LIO sollecita costantemente la generosità dei professionisti a noi più vicini, che a titolo volontario e gratuito producono materiale informativo in lingua italiana e in un linguaggio comprensibile da non addetti ai lavori, a beneficio di tutti i pazienti italofoni. 

IL DIRITTO DEL PAZIENTE ALLA VERITÀ E ALLA CORRETTA INFORMAZIONE È SACROSANTO E INALIENABILE E TUTELATO DALLA LEGGE. 

ASCOLTA LA PRESIDENTE DELLA LIO AFFRONTARE IL DELICATO ARGOMENTO DELL’INFORMAZIONE AL PAZIENTE.