The_lympha

#Primarylymphedema as #raredisease Opinions are my own

[The_lympha @LymphaThe]

One of the best things about conferences is meeting other patients 🥰 #lymphedema #raredisease #isl2023

[The_lympha @LymphaThe]

👉"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." 👈

[Lymphoedema Wales Clinical Network (LWCN) @LymphNetWales]

Our article published in the International Wound Journal: "Evaluating the cost of managing patients with cellulitis in Wales, UK". Link: https://t.co/ODYkBGw9KU 😄 #lymphoedemawales #lwcn #cellulitis #nationalcellulitisimprovementprogramme #ncip #iwj #nhs #nhswales

[The_lympha @LymphaThe]

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👏 https://t.co/cpYKE3XeGP

[The_lympha @LymphaThe]

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" 👏

[Dr Melanie Thomas @Lymphwales]

And it's finally published! LVA IN WALES. @ILF_Lympho @BritishLymph @LymphNetWales @Lymph_Innovate @hwa_swansea

[The_lympha @LymphaThe]

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

[The_lympha @LymphaThe]

Fabulous days at the Italian Lymphoedema Framework conference in Alba. Loved to meet up with patients from across Italy. 💗 @ILF_Lympho

[The_lympha @LymphaThe]

@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. 🐛🍇🍉

[The_lympha @LymphaThe]

@EllieDring @nottmhospitals @ILF_Lympho @NUHNursing @NUHInstitute @UniNottsCHILL @NottmUniBschool @MelvinWar2004 Very good presentation for raising awareness of the patient perspective. Thank you.

[The_lympha @LymphaThe]

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

[The_lympha @LymphaThe]

Best part of a patient workshop ❤️ meeting likeminded. #lymphedema

[The_lympha @LymphaThe]

Great start to DALYFOs workshop with Dr Christoffer Nissen from Bispebjerg Hospital. Appreciation to experts who support patient associations 🙏 #lymphedema

[The_lympha @LymphaThe]

And it's a wrap. Another year of advocacy work. So much achieved. So amazing friendships I have gotten along the way. 💙 #lymphedema #WorldLymphedemaDay

[The_lympha @LymphaThe]

What great news for the #lymphedema patient community. Well done Nicole 🤩 #raredisease #primarylymphedema

[EURORDIS-Rare Diseases Europe @eurordis]

The votes have been counted! 🗳️

The winner of the EURORDIS Social Media Award 2023 is…. 🥁

Nicole Faccio!

@NicoleFaccio #EURORDISAwards2023

[The_lympha @LymphaThe]

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

[VASCERN @vascern]

🗓️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 ➡️ https://t.co/qmnXmZaaML
#geneticresearch

[The_lympha @LymphaThe]

@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.

[The_lympha @LymphaThe]

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 🤗

[The_lympha @LymphaThe]

Retweet! Can all the #patientadvocates please share this! More #research in #primarylymphedema as #raredisease Thanks! 🤗 #genetics #geneticresearch

[EVBO @EVB_Org]

#JobOffer @TheBHF 4 year #PhD at @imperialcollege working in @birdseylab and @CebolaLab on #lymphoedema and #ERG variants. Apply by 20th February 2023: https://t.co/rA0bansKUb Details attached.

[The_lympha @LymphaThe]

So fantastic to get more #research into #primarylymphedema as #raredisease. Please share @lymphsupport @LWO #lymphoedema

[EVBO @EVB_Org]

#JobOffer @TheBHF 4 year #PhD at @imperialcollege working in @birdseylab and @CebolaLab on #lymphoedema and #ERG variants. Apply by 20th February 2023: https://t.co/rA0bansKUb Details attached.

[The_lympha @LymphaThe]

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

[The_lympha @LymphaThe]

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