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Become An IGA Volunteer

17 March 2021

We need volunteers to join us and support us in successful achievement of our goals and 2021 work programme.  We have several opportunities open at this moment so please take a look and let us know if you are available to volunteer for us.
  
Benefits of becoming a volunteer include:

  • training
  • meeting key people in the Gaucher community
  • travel grants for important conferences (for accomplished volunteers)
  • opportunities to develop and lead projects etc.
  • a certifcate and letter to acknowledge contribution to IGA's work programme

 

Current opportunity: Join the working group on additional morbidities/complications in life with Gaucher disease and represent the patient view

We need a volunteer to work on the comorbidities project together with our project lead, Margaret Giuliani, and the EWGGD.  Read the role description here

The ideal candidate should have experience with hematological and other malignancies as we are working on a GD guideline, and it is important to involve patients because we want guidelines that are patient-friendly.

The guidelines should follow the methodology: The Levels of Evidence and their role in Evidence-Based Medicine (nih.gov) and be relevant globally 

  • Carry out a detailed literature review 
  • Describe the epidemiology with practical guidelines for surveillance 
  • Ensure guidelines are patient-centric and practical 
     

Have in mind that you will not be working alone, you will work with doctors and patients together. One or two hours a week are more than enough time for this project plus addiitional time for meetings with the working group. 

For more information email Vesna Aleksovska

 

Other opportunities

  1. Editing videos
    • Add subtitles to recorded webinars
    • Edit webinar videos 
    • It takes 2-3 hours every other month in 2021
  2.  Design
    • Designing flyers and adverts for webinars with input from the working group
    • This activity is one year (2021) with possibility to continue engagement on similar or other activities for the next year and there will be 6 webinars in 2021
  3. Translation
    • We need volunteers for translations from English to one or more languages: Spanish, French, Russian, Arabic, Italian, German and others.
    • A volunteer will translate webinars every second month (6 webinars this year with duration of 1 to 2 hours each).
  4. Patient coordinator in India
    • Liaise with pharma companies, doctors and patients receiving treatment under compassionate access programs during new and re-supply treatment processes
    • Coordinate and follow-up with patients and doctors to ensure all documents required by pharma companies for the treatment approval and import process are obtained and received by the companies in a timely manner
    • Guide the patients/caregivers and doctors in case of any issues during the documentation process
    • The engagement is one year, with possibility to extend engagement for similar or other activities on yearly basis.

 
When you become an IGA volunteer, you will:

  • be entered in our volunteer database
  • receive orientation training (1 hour to explain documents and the principles of work of the IGA)
  • be assigned a mentor with whom you can talk to during your volunteer time
  • be helping us in developing and implementing activities to support accomplishment of the IGA's mission and goals in the 2021-2023 strategy.