Siti affidabili

La LIO – LIPEDEMA ITALIA ONLUS – Associazione Nazionale Pazienti Affetti da Lipedema, 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.

Siamo impegnate in prima linea per aiutarvi a misurarvi con le fonti informative diffuse tramite i portali delle associazioni e società scientifiche che si occupano specificamente di patologie RAD (RARE ADIPOSE DISORDERS) come il lipedema.
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. Colmare questa defezione è uno dei primi impegni assunti dall’associazione.

Come professionisti della mediazione linguistica e culturale, siamo impegnate in progetti di localizzazione e traduzione di materiali divulgativi per non addetti ai lavori e di articoli scientifici destinati a specialisti, al fine di ripristinare IL DIRITTO DEL PAZIENTE ALLA VERITÀ CHE È SACROSANTO E INALIENABILE ED È LA NOSTRA PRIORITÀ MASSIMA IN QUESTA FASE DI CONFUSIONE E DISINFORMAZIONE.

Pur non parlando tutte le lingue del mondo, leggiamo avidamente i materiali plurilingue provenienti dall’estero e spingiamo le pazienti che seguono l’associazione a fare altrettanto, ponendo particolare cura e attenzione nella selezione delle fonti in base alla loro validità scientifica e attendibilità, seguendo un criterio scientifico e conforme alla comune ricerca accademica, e guidiamo i pazienti affetti attraverso un percorso informativo consapevole che li renda malati proattivi e partecipi del proprio percorso di cura come malati cronici che devono convivere a vita con l’affezione. I mezzi di comunicazione che abbiamo a disposizione consentono a chiunque di leggere e informarsi anche utilizzando software di traduzione automatica a disposizione di chiunque. Restiamo a disposizione per assistere i pazienti nell’uso informale degli stessi e per aiutarli a comprenderne i contenuti attraverso la nostra opera di mediazione linguistica e culturale e l’informazione dei medici e professionisti che si sono messi a disposizione dei pazienti per spiegare contenuti per non addetti ai lavori in maniera semplice e comprensibile per tutti. Periodicamente organizziamo webinar e momenti di incontro virtuale tra pazienti e professionisti, finalizzati a promuovere l’informazione globale sulla malattia e il contatto tra questi due mondi, fin troppo strumentalizzato da chi preferisce pazienti male informati per renderli più inclini ad accettare acriticamente le terapie proposte anche senza indicazione opportuna al trattamento.

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

https://www.fatdisorders.org/
FDRS is dedicated to improving the quality of life for all people affected by adipose tissue disorders by supporting research, education, advocacy, and collaboration. The Fat Disorders Resource Society (FDRS) (formerly the Fat Disorders Research Society) 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.

https://www.lipedema.org/
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

3) https://lipedemaproject.org/ 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.

 

 https://treat.medicine.arizona.edu/home 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.

5) http://www.lipomadoc.org/ 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.

http://www.curelipedema.org/ 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.

 https://www.lipoedema.co.uk/ 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.