LUPUS EUROPE – PATIENTS ADVISORY NETWORK

People with lupus need new and better treatments to improve their long-term prognoses and their quality of life. We need a better understanding of the disease and its medical, social and psychological impact, so that effective plans can be put in place. LUPUS EUROPE strongly believes that such research can only take place with the active participation of people with lupus, and of patient organisations.

To understand how we can best progress, LUPUS EUROPE organised a workshop session with Doctors and Scientists engaged in research, with other patient groups and non-profit organisations actively engaged in this area; and with representatives of the pharmaceutical industry engaged in Lupus related research. In addition, it gathered input from its members through a survey. These various initiatives have converged to the conclusion that to achieve the most meaningful results, LUPUS EUROPE should establish a “Patient Advisory” Group as defined below.

The Mission

The Patient Advisory Network (PAN) is a team of 20 to 25 trained and energised experienced patients, living with lupus, appointed by LUPUS EUROPE to act as liaison and resource to value-adding scientific projects, clinical trials and other research related to lupus, including EULAR task forces, SLEuro initiatives and ERN Research. They structurally connect the patient community to the scientific community. They provide prompt, reliable and consistent advice and support from the very initial stages of research all the way to effective access through treatment plans.

 

If you are interested in working as part of  LUPUS EUROPE PATIENT ADVISORY NETWORK, or have projects that would benefit from our support, contact LUPUS EUROPE’s secretariat (secretariat@lupus-europe.org)

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✍🏻Täytä kysely.

🔊Jaa yhteisösi kanssa.

👨🏼‍⚕Jos olet terveydenhuollon ammattilainen ja kohtelet lupuspotilaita Euroopassa, arvostaisimme suuresti, jos informoisit potilaitasi.

s.surveylegend.com/-NrB_0Hf4Z-ZAZH55K7U
... See MoreSee Less

✍🏻Täytä kysely.

🔊Jaa yhteisösi kanssa.

👨🏼‍⚕Jos olet terveydenhuollon ammattilainen ja kohtelet lupuspotilaita Euroopassa, arvostaisimme suuresti, jos informoisit potilaitasi. 

https://s.surveylegend.com/-NrB_0Hf4Z-ZAZH55K7U
2 days ago

✍🏻Dalyvaukite apklausoje.

🔊Dalinkitės savo bendruomenėje

👨🏼⚕Jeigu esate sveikatos priežiūros specialistas ir gydote vilklige sergančius pacientus Europoje, būtume labai dėkingi, jei informuotumėte savo pacientus.

s.surveylegend.com/-NqwWcQ0UhyMxDtCBYRD
... See MoreSee Less

✍🏻Dalyvaukite apklausoje.

🔊Dalinkitės savo bendruomenėje

👨🏼⚕Jeigu esate sveikatos priežiūros specialistas ir gydote vilklige sergančius pacientus Europoje, būtume labai dėkingi, jei informuotumėte savo pacientus. 

https://s.surveylegend.com/-NqwWcQ0UhyMxDtCBYRD
3 days ago

✍🏻Completează sondajul.

🔊Împărtășește cu comunitatea ta.

👨🏼⚕Dacă ești un profesionist în sănătate și tratezi pacienți cu lupus în Europa, am aprecia foarte mult dacă i-ai informa pe pacienții tăi.

s.surveylegend.com/-NrUOqKxZuU6V6KLfWoG
... See MoreSee Less

✍🏻Completează sondajul.

🔊Împărtășește cu comunitatea ta.

👨🏼⚕Dacă ești un profesionist în sănătate și tratezi pacienți cu lupus în Europa, am aprecia foarte mult dacă i-ai informa pe pacienții tăi.

https://s.surveylegend.com/-NrUOqKxZuU6V6KLfWoG