Lid Werkgroep Richtlijnherziening
Organisation role · 4–5 hrs/Week
From home
WellbeingPeople with disabilitiesChildren & youth
Contact person
Kinga GomoluchAsk Kinga a question
ME/CVS Stichting Nederland
#49596
Scan me or visit www.volunteer.deedmob.com/o/MECVS-Stichting-Nederland/opportunities/Lid-Werkgroep-Richtlijnherziening/49596 to join
Scan me or visit www.volunteer.deedmob.com/o/MECVS-Stichting-Nederland/opportunities/Lid-Werkgroep-Richtlijnherziening/49596 to join
Summary
Deze werkgroep is namens de ME/CVS Stichting nauw betrokken bij de herziening van de Nederlandse richtlijn ME/CVS.Detailed description
Op dit moment zit de werkgroep in de opstartfase, een ideaal moment dus om je aan te sluiten. Vanaf de zomer zul je je gaan bezighouden met zaken als het beoordelen van relevante wetenschappelijke literatuur en het verwerken van patiënteninformatie die verzameld wordt door middel van raadplegingen zoals enquêtes. Dit alles doen we samen met andere ME/CVS-patiëntenorganisaties, verenigingen van medisch specialisten en het Zorginstituut Nederland. De schatting is dat dit proces nog tot medio 2023 zal duren en je ongeveer 4-5 uur (online) per week zal kosten.
WAT BRENG JE BIJ VOORKEUR MEE?
Wij zijn op zoek naar mensen die beschikken over het volgende:
- Enige kennis van ME/CVS (als patiënt of verzorger);
- De vaardigheid om Engelstalige teksten te lezen en begrijpen;
- HBO+ werk- en denkniveau;
- 4-5 uur per week inzetbaar zijn.
WAT WIJ JE BIEDEN
- Zinvol werk waarin je bijdraagt aan de verbetering van de positie van en hulp aan ME/CVS-patiënten;
- Een warm nest waarin je je gewaardeerd voelt;
- aansprakelijkheidsverzekering, cursussen, onkostenvergoedingen etc.
What volunteers need
🗣️ Native language skills
What we will provide to volunteers
💸 Reimbursement of costs🤝 Extra supportAbout ME/CVS Stichting Nederland
The ME / CFS Stichting Nederland is committed to strengthening the position of patients with ME / CFS (chronic fatigue syndrome). We focus on ALL ME / CFS patients. Regardless of the severity of their illness, their origin, gender or age. Young people with ME / CFS receive extra attention from us. They still have a life ahead of them and deserve extra help.
We do this by:
- Aiming for broad recognition and recognition of ME / CFS as a very serious disabling physical disease
- offering (a platform for) contact with fellow sufferers
- Contribute with progress towards the cure of ME / CFS
- as a knowledge center for ME / CFS to contribute to the sharing of information, knowledge and experience
- contribute from our network to scientific research aimed at the cure of ME / CFS.
For this we focus on ME / CFS patients, their family members and relatives, healthcare professionals and policymakers. We continuously work to achieve our goals with dedication, independence, integrity and an open attitude. We have an inclusive, positive basic attitude. We look at what can still be done and what can be improved. We are optimistic and enjoy our work. Our bottle is always half full and never half empty.
Activities
Representing interests, offering fellow sufferers contact and providing information
We do this by:
- Aiming for broad recognition and recognition of ME / CFS as a very serious disabling physical disease
- offering (a platform for) contact with fellow sufferers
- Contribute with progress towards the cure of ME / CFS
- as a knowledge center for ME / CFS to contribute to the sharing of information, knowledge and experience
- contribute from our network to scientific research aimed at the cure of ME / CFS.
For this we focus on ME / CFS patients, their family members and relatives, healthcare professionals and policymakers. We continuously work to achieve our goals with dedication, independence, integrity and an open attitude. We have an inclusive, positive basic attitude. We look at what can still be done and what can be improved. We are optimistic and enjoy our work. Our bottle is always half full and never half empty.
Activities
Representing interests, offering fellow sufferers contact and providing information