Lipoedema UK

We are so proud to be a part of this project and to announce that the Lipedema Manifesto launches today, 11 June, which is a special day within #Lipedema #Lipoedema Awareness Month. This is a focal day for raising awareness of lipedema and of the patient perspective on the priorities and needs for change, which are captured in The Lipedema Manifesto. The Manifesto describes the key issues around lipedema in 9 key points and has three main calls for action/change: ·        Increased funding for research (and involvement of patients in determining research priorities, not just as participants) ·        Educational programmes on lipedema for healthcare professionals ·        Improved access to specialized care for those living with lipedema As these issues stretch across boarders, please share the manifesto with political and policy contacts, healthcare professionals/persons involved in the funding and organisation of healthcare services and all those living with lipedema… please share it widely with any contacts that might be inspired to help us achieve our manifesto aims. We hope that our shared actions will raise awareness and show that wherever we live in the world, we are all aligned in raising awareness and calling for these changes. We want the manifesto to unite our calls all year round, not just for Lipedema Awareness Month 2024, so please share your ideas on how we can continue to use it. We are already seeing some amazing and creative social media on this so we can't wait to see what comes next as #TogetherWeCanBeatLipoedema! #LipedemaAwarenessDay #LipedemaAwarenessMonth #TogetherWeCanMakeAChange #TogetherWeCanBeatLipedema #LipedemaResearch

We are flying through #LipedemaAwarenessMonth #LipoedemaAwarenessMonth and this week, the day before our session with our Founder Suzanne Evans on Thursday (which is bound to be a fascinating review of her life with #lipoedema), we've got the first Lipedema World Alliance session with Dr.med. Gabriele Faerber giving an overview of "What's new in #nutrition for #lipedema". Gabriele was involved in the recent German S2 Guidelines for lipoedema so it will be great to hear more about those and about other nutritional research, along with her clinical experiences. You can join her session on Wednesday at 7pm CEST (6pm UK) on The LWA YouTube channel https://lnkd.in/dA_k4Xvi. We look forward seeing you there!

As a member of National Voices, we collaborate on campaigns with over 200 other health and care #charities that affect people living in England. We know that people with acute and chronic conditions have been experiencing medicine shortages across the UK for some time now. Whilst #lipoedema #lipedema doesn't have a pharmacological treatment (yet!), we appreciate that the shortages cause significant concerns to people living with a variety of long term conditions. National Voices are working with the Royal Pharmaceutical Society (RPS) to understand the causes of medicines shortages, the collaborative action that could be taken to mitigate against these occurring in the future and how patients and carers can be better supported when they do happen. To gather this data they have a survey for individuals throughout the UK to feedback on the way in which medicine shortages have affected them. Please complete and share: https://lnkd.in/er4pXdGv

This week is a special health charity draw at Benefact Group, closing Friday 26 April. One lucky charity will get £5k & it takes you < 1 minute to fill out the prize draw nomination. Please take that minute to increase our chances of getting that money which can help us meet the costs of our activities such as: Attending The Primary Care Show in May where we will have one of our team presenting to GPs & other volunteers all spreading information on diagnosing & treating #lipoedema to as many healthcare professional attendees as possible. Organising our fabulous Lipoedema UK health & wellbeing webinars where we've got great speakers live week in and week out & are always trying to bring the latest information to our members to help them live as well as they can with #lipedema. Thank you (and whilst you are on the nomination site, if you have a second minute you can also nominate us for the next "regular" charity draw for £1k, and you can nominate more than one charity so you don't need to decide between us and other causes that are also close to your heart). https://lnkd.in/d54GV3vP

Our website has lots of information to help you / your patients on the journey with Lipoedema. One topic often raised is how to get a diagnosis. Head to this page for more on this: https://lnkd.in/eTw83zDu #lipoedemauk #livingwithlipoedema #lipoedemadiagnosis

Great opportunity!

News from our friends at The Lipedema Foundation. #livingwithlipoedema #togetherwecanbeatlipoedema

International Women's Day is today, March 8. Lipoedema UK joins with these celebrations of women around the world. This years theme & statement: “Imagine a gender equal world. A world free of bias, stereotypes, and discrimination. A world that's diverse, equitable, and inclusive. A world where difference is valued and celebrated. Together we can forge women's equality. Collectively we can all #InspireInclusion. Celebrate women's achievement. Raise awareness about discrimination. Take action to drive gender parity. IWD belongs to everyone, everywhere. Inclusion means all IWD action is valid.” Imagine a world where women’s health is understood and all conditions treated. #togetherwecanbeatlipoedema #livingwithlipoedma #lipoedemauk #celebratingwomen #internationalwomensday2024

More information and resources from our friends at L-W-O Community for World Lymphoedema Day: “This week we are celebrating Lymphoedema Awareness Week (4th–8th), and March 6th is World Lymphoedema Day. I will be putting events on our public page, please share. If you are celebrating in any way, please let me know so that I can add it to our social media. “ #LAW #WLD #lymphoedema #PatientEmpowerment #CommunityEngagement L-W-O Community for more!

Lipoedema UK supports and promotes World Lymphoedema Day - many of us with Lipoedema also have lymphoedema. More information about this awareness day here: https://lnkd.in/evVAku_x #lipoedemauk #lymphoedemaawareness #bls