The_lympha @LymphaThe
#Primarylymphedema as #raredisease Opinions are my own Joined June 2019-
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One of the best things about conferences is meeting other patients 🥰 #lymphedema #raredisease #isl2023
👉"the increasing evidence base that compression rather than prophylactic antibiotics is most useful in preventing recurrence of cellulitis, especially in the previously difficult to treat/higher-risk patients is relevant." 👈
Our article published in the International Wound Journal: "Evaluating the cost of managing patients with cellulitis in Wales, UK". Link: doi.org/10.1111/iwj.14… 😄 #lymphoedemawales #lwcn #cellulitis #nationalcellulitisimprovementprogramme #ncip #iwj #nhs #nhswales
Please take a few minutes to watch this abstract presentation from @ILF_Lympho by @ElineHoogstra, expert patient and Dutch patient advocate, to acknowledge the amazing work and collaboration among associations in Europe. Thanks Eline👏 youtu.be/vOi1I_W1G0I
Great to see these parameters included in this study: - "quality of life statistically improved as well as pain, heaviness, anxiety, impact on hobbies, work, purchasing clothes and intimacy/desirability" 👏
And it's finally published! LVA IN WALES. @ILF_Lympho @BritishLymph @LymphNetWales @Lymph_Innovate @hwa_swansea
Had the opportunity at the Italian Lymphoedema Framework conference to participate in a round table discussion on the challenges of the patients and caregivers to obtain their compression garments. Patient involvement is at the heart of ILF. #lymphedema @ILF_Lympho
Fabulous days at the Italian Lymphoedema Framework conference in Alba. Loved to meet up with patients from across Italy. 💗 @ILF_Lympho
@Lymphwales @northernlymph I loved this presentation. Went straight to youtube to watch the suggested talk and have been putting the learnings into practice to support my newly discovered organ. 🐛🍇🍉
@EllieDring @nottmhospitals @ILF_Lympho @NUHNursing @NUHInstitute @UniNottsCHILL @NottmUniBschool @MelvinWar2004 Very good presentation for raising awareness of the patient perspective. Thank you.
Dr. Christoffer Nissen from Bispebjerg Hospital talking about @vascern at DALYFOs workshop today. Thank you for the recognition of the work of the patient representatives 🙌 #lymphedema #raredisease
Best part of a patient workshop ❤️ meeting likeminded. #lymphedema
Great start to DALYFOs workshop with Dr Christoffer Nissen from Bispebjerg Hospital. Appreciation to experts who support patient associations 🙏 #lymphedema
And it's a wrap. Another year of advocacy work. So much achieved. So amazing friendships I have gotten along the way. 💙 #lymphedema #WorldLymphedemaDay
What great news for the #lymphedema patient community. Well done Nicole 🤩 #raredisease #primarylymphedema
The votes have been counted! 🗳️ The winner of the EURORDIS Social Media Award 2023 is…. 🥁 Nicole Faccio! @NicoleFaccio #EURORDISAwards2023
This is the webinar for all patients with primary lymphedema and/or caregivers. With Prof Sahar Mansour and Carina Mainka, mother of a child with #kif11 #lymphedema #Genetics
🗓️Mark your calendars! We’re hosting a #webinar to talk all things #genetics and primary #lymphedema. Join us on February 28 at 5 pm CET for an insightful session. Don't miss out and be sure to bring your #questions Register here ➡️ tinyurl.com/GeneticsandLym… #geneticresearch
@Rebeccaelwell3 @BritishLymph 🙌 so true...not just physical characteristics but also daily life such as work, exercise, activity level and body image should be included when compression garment is measured for and ordered.
Presenting the PPL VASCERN #cellulitis flowchart to clinicians at @ASLBiella today, along with my personal pillars of self-management in #lymphedema. Thank you to the organisers for involving the patients 🤗
Retweet! Can all the #patientadvocates please share this! More #research in #primarylymphedema as #raredisease Thanks! 🤗 #genetics #geneticresearch
#JobOffer @TheBHF 4 year #PhD at @imperialcollege working in @birdseylab and @CebolaLab on #lymphoedema and #ERG variants. Apply by 20th February 2023: buff.ly/3HBZbti Details attached.
So fantastic to get more #research into #primarylymphedema as #raredisease. Please share @lymphsupport @LWO #lymphoedema
#JobOffer @TheBHF 4 year #PhD at @imperialcollege working in @birdseylab and @CebolaLab on #lymphoedema and #ERG variants. Apply by 20th February 2023: buff.ly/3HBZbti Details attached.
Such a privilege to get to meet with Prof Christine Moffatt and hear her talk about quality of life for children and young people with #lymphedema. Results will be presented at @ILF_Lympho conference in june. #kidscreen #QoL #raredisease
Best part of attending a #patientcentered conference is the patient participation. Thank you to the organisers at San Giovanni Bosco Hospital. #cmid #ern #raredisease #lymphedema
VASCERN @vascern
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the Lymphie Life @TheLymphieLife
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the Lymphie Life @TheLymphieLife
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BLS @BritishLymph
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Elena Matta @ElenaMatta3
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