My very 1st #EULAR. What a journey it has been so far. Elsa Mateus you are a unique mentor. I am so blessed to have you. Thank you my Captain! 👩‍✈️🙏🏻❤️ #RMDs #rCTDs #Sjögren LPCDR • Liga Portuguesa Contra Doenças Reumáticas Sjögren Europe EULAR ERN ReCONNET 🇪🇺

ℹ️ Upcoming webinar ERN ReCONNET 🇪🇺 May 3, 2023 4:00pm CET « Signs and symptoms of rare connective tissue diseases (#rCTDs) – when to refer to the rheumatologist? » 🩺 Cristina Pamfil (County Emergency Clinical Hospital, Cluj) 👉🏼 reso-bordeaux.fr/le-centre/lern… #rarediseases #fsmr

Ana Maria Rodrigues at the ERN ReCONNET 🇪🇺 congress presenting the role of Reuma.pt in implementing FAIR principles in #RMDs registries. Reuma.pt currently has over 31,000 registered patients with protocols for most #rCTDs, including >1,000 #Sjogrens pts

Just out “Exploring patient’s experience and unmet needs on pregnancy and family planning in rare and complex connective tissue diseases: a narrative medicine approach” #lupus #APS #SVV #Sjogrens #rCTDs Great Collaboration ERN ReCONNET 🇪🇺 Lupus Europe rmdopen.bmj.com/content/rmdope…

Just out “Exploring patient’s experience and unmet needs on pregnancy and family planning in rare and complex connective tissue diseases: a narrative medicine approach” #lupus #APS #SVV #rCTDs Annals of the Rheumatic Diseases🤰Great collaboration ERN ReCONNET 🇪🇺 Lupus Europe rmdopen.bmj.com/content/rmdope…

#ERNReCONNET lights up the #LeaningTower on #RareDiseaseDay to raise #awareness and generate change for the 300 million people worldwide living with a #raredisease, their families and carers. From 18.30 to 23.00 the colours and logo of #RDD will be projected on the Tower #rCTDs

#EULAR Committee Chairs for #RareDiseaseDay! #RareDiseaseDay2022 Raising #awareness and generating change for the 300 million people worldwide living with a #raredisease, their families and carers. #rCTDs reconnet.ern-net.eu

Plenary Meeting of #ERNReCONNET just started! From the beginning to the future. Two days of discussion and plans on #patients' involvement, clinical practice #guidelines, #registries, #education and #training, #pathways, #CPMS and National Hubs #ERNeu #rCTDs #ShareCareCure

You can still participate in the #TogethERN #ReCONNET #Survey aimed at Mapping of existing #rCTDs #registries. You can reply to the survey at the following link: ec.europa.eu/eusurvey/runne… The Survey will be available until the 31st of August both for #clinicians and #patients

Fill the #survey to identify existing #registries dedicated to #rCTDs and to map useful information on each registry (diseases covered, type of registry, publications, etc.) ec.europa.eu/eusurvey/runne… ERN ReCONNET 🇪🇺 Ana Vieira Silvia Aguilera Charissa Frank Fesca SRUK | Scleroderma & Raynaud's UK

#VACCINATÈ #RareDisease #malattierare #patients #diseases #rCTDs #UNIAMO #ERN ERN ReCONNET 🇪🇺 Rosaria (Sara) Talarico Diana Marinello 🇪🇺 Ilaria Galetti 🇸🇩 Andrea Gaglioti Istituto Superiore di Sanità uniamomalattierare

The aim of #VACCINATE (#COVID #Vaccination in Rare and Complex Connective Tissue #Diseases: #ERNReCONNET Multicentre Prospective Cohort Study) is to gather sufficient number of cases of #rCTDs #patients who will receive COVID-19 vaccination.

#VACCINATE is a 30 months, multicentre, prospective observational study on adult (>18 y) #patients with a diagnosis of rare and complex connective tissue #diseases (#rCTDs) who will be given the vaccine during the period from January 2021 and January 2022 clinicaltrials.gov/ct2/show/NCT04…

Delighted to share our last paper about health economic evaluation in rare and complex diseases! #healtheconomics #rCTDs Clinical and Experimental Rheumatology Istituto Superiore di Sanità ScuolaSantAnna

Delighted to share our last paper about health economic evaluation in rare and complex diseases! #healtheconomics #rCTDs Clinical and Experimental Rheumatology Istituto Superiore di Sanità ScuolaSantAnna

The most relevant data on #healtheconomics in rare and complex #connectivetissue #diseases published in 2019 clinexprheumatol.org/article.asp?a=… Clinical and Experimental Rheumatology An overview of the most recent evidence regarding the economic and organisational impact of #rCTDs by SantAnnaPisa and Istituto Superiore di Sanità

#pregnancy and #rCTDs: my wonderful ePAG colleague Silvia Aguilera brings the #patient’s perspective whilst prof Marta Mosca explains the clinical management. Do not miss it on #ReCONNET #YOUTUBE channel

Now available on our YouTube channel the #ERNReCONNET #webinar on "#Pregnancy and rare and complex connective tissue #diseases" youtu.be/EuKkcX5FzT8 with Silvia Aguilera and Marta Mosca #rCTDs #clinicalmanagement #rheumatology

Back again to the Field. 17.02.2019-09.02.2019 ❤️ #rctds🎭 instagram.com/p/B8V0jSSpdpbl…