The congress on #rarediseases at Turin... session: "novelties in medical management of primary lymphedema and lipedema" with Prof Michelini.

Indications for surgery in #primarylymphedema with Francesco Boccardo. #raredisease #surgery

#Genetics and Therapeutic Approach Managing Children with #Lymphoedema with Prof Quéré, important work for patients with a #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

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

So fantastic to get more #research into #primarylymphedema as #raredisease. Please share LSN Lonn Olson #lymphoedema

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

Presenting the PPL VASCERN #cellulitis flowchart to clinicians at Ospedale di Biella-ASLBI today, along with my personal pillars of self-management in #lymphedema. Thank you to the organisers for involving the patients 🤗

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

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

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

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

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

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

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

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

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" 👏

Please take a few minutes to watch this abstract presentation from ILF_Lympho by Eline Hoogstra, expert patient and Dutch patient advocate, to acknowledge the amazing work and collaboration among associations in Europe. Thanks Eline👏 youtu.be/vOi1I_W1G0I

👉"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." 👈

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