Saskya Angevare

Saskya Angevare
non-profit organisations

About

22
Publications
1,027
Reads
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62
Citations
Citations since 2016
22 Research Items
62 Citations
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Introduction
I am an patient advocate of the Autoinflammatory Alliance (non-profit org), KAISZ, ENCA. We are trying to increase awareness, care and treatment for patients with autoinflammatory diseases. In this role, I help patients international and patients organisation with finding the right information on this rare diseases.

Publications

Publications (22)
Article
Full-text available
Introduction/Background Vaccination of children and young people (CYP) with rheumatic and auto-inflammatory diseases is reported to be lower than amongst healthy peers. Whilst vaccination to confer protection against COVID-19 is now underway amongst adults and adolescents, vaccination of CYP under 16 years was not available at the time of this stud...
Article
Full-text available
Introduction/Background During the COVID-19 (coronavirus) pandemic, some healthcare provision shifted to remote, technology-assisted appointments (telemedicine). This study sought the views of parents/carers about telemedicine, identifying the benefits and limitations, to assist in improvement to future service provision. Description/Method An onl...
Article
Full-text available
Introduction/Background During the COVID-19 (coronavirus) pandemic, some provision of healthcare shifted to remote, technology-assisted appointments (telemedicine). Whilst parents/carers of children and young people with rheumatic conditions have reported benefits of telemedicine, concerns remain. This patient and parent-led project sought to under...
Article
Background A major concern across rheumatology in recent years is how contracting COVID-19 may impact the control of rheumatic diseases. Objectives To quantify any difference in rheumatic disease control between those who did and did not contract COVID-19 between March and December 2020 and whether rheumatic disease control changed after COVID-19...
Article
Background During the COVID-19 (coronavirus) pandemic, some provision of healthcare shifted to remote, technology-assisted appointments (telemedicine). Whilst parents/carers of children and young people with rheumatic conditions have reported benefits of telemedicine, concerns remain. Objectives This patient and parent-led project sought to unders...
Article
Full-text available
Objective To examine the frequency of, and risk factors for, disease flare following COVID-19 vaccination in patients with systemic rheumatic disease (SRD). Methods An international study was conducted from April 2 to August 16, 2021, using an online survey of 5619 adults with SRD for adverse events following COVID-19 vaccination, including flares...
Article
Background/Aims During the COVID-19 (coronavirus) pandemic, some healthcare provision shifted to remote, technology-assisted appointments (telemedicine). This study sought the views of parents/carers about telemedicine, identifying the benefits and limitations, to assist in improvement to future service provision. Methods An online survey was deve...
Article
Background The impact and consequences of the COVID-19 pandemic on people with rheumatic disease are unclear. We developed the COVID-19 Global Rheumatology Alliance Patient Experience Survey to assess the effects of the COVID-19 pandemic on people with rheumatic disease worldwide. Methods Survey questions were developed by key stakeholder groups a...
Article
Background People with rheumatic diseases may be at increased risk of contracting COVID-19 due to their rheumatic disease or immunosuppressive treatments. It is currently unclear what the COVID-19 disease burden is for these people and whether any of their personal or disease characteristics are associated with contracting COVID-19. Objectives To...
Article
Background/Aims In March 2020, the WHO characterised COVID-19 as a pandemic. Whilst many people with COVID-19 infection appeared to have mild or no symptoms, a significant proportion became seriously ill. At the time, little was known about how patients with rheumatic or autoimmune conditions, many of whom use immunosuppressive medications, are af...
Article
Background/Aims Younger and older people with rheumatic diseases may experience increased anxiety during the COVID-19 pandemic, due to the uncertainty regarding their likelihood of contracting the virus, its complications alongside their existing condition and whether their immunosuppressive treatments pose additional risks. This study explored tr...
Poster
Full-text available
Introduction: Fatigue is a subjective state of overwhelming, sustained exhaustion and decreased physical and mental capacity, which is not relieved by rest. Fatigue is the most common complaint in children and teens with an autoinflammatory disease, besides the disease related flares. The purpose for this study was to show that fatigue is a serious...
Poster
Full-text available
Introduction: Systemic juvenile idiopathic arthritis (SJIA) and Adult-onset Still's Disease (AOSD) are related arthropathies with features of autoinflammation and onset in children and adults, respectively. Due to their chronic course, we hypothesized that SJIA and AOSD have negative impact on quality of life (QOL). We also hypothesized that childr...
Poster
Full-text available
Introduction: Vaccination WP has its first meeting at PRES congress in Athens 2017. Officially it was established in 2018 PRES congress in Lisbon, Portugal. One of the main reasons for establishing this WP was low level of evidence on which recommendation for vaccination in children with rheumatic diseases (RD) was based and it was concluded that i...
Conference Paper
Full-text available
Background : The European Network for Children with Arthritis (ENCA) is a pan-European network led for and by parents and young people with rheumatic and musculoskeletal diseases (RMDs). The activities of ENCA are delivered on a voluntary basis by parents and young people passionate about improving the care and treatment of children and young peopl...
Conference Paper
Full-text available
Background The European Network for Children with Arthritis (ENCA) is a pan-European network led for and by parents and young people with rheumatic and musculoskeletal diseases (RMDs). ENCA’s activities are delivered voluntarily by parents and young people passionate about improving the care and treatment of children and young people (CYP) with RMD...
Poster
Full-text available
The European Network for Children with Arthritis (ENCA) is a pan-European network led for and by parents and young people with rheumatic and musculoskeletal diseases (RMDs). The network is supported by the Paediatric Rheumatology European Society (PReS) for doctors, healthcare professionals and researchers. ENCA's role is help national patient orga...

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