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You could support us by volunteering your time, skills, and expertise.

 

A variety of skills and knowledge will be helpful and appreciated in fulfilling our mission. And remember that volunteering is a two-way street, you help IGA, and IGA helps you in the personal development of different skills and building your communication network. 
 

If you would like to get involved and help Gaucher families all over the world, please contact Vesna Aleksovska who will get more details on how can you can get involved and support the IGA's work. 
 

Current opportunities

 

Home therapy research and analysis  

  • Attending meetings (no more than 4 annually, on Zoom or Teams) 
  • Participate in desk research to gather information/published literature on home therapy. 
  • Communicate with other organizations affected by this issue. 
  • Participate in developing a poster presentation on home therapy. 
  • Communicate with IGA members on home therapy issues. 

 

For more information, please read the full description.

 

 

Comorbidities project

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.

  • 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 please read the full description.

 

 

Editing videos

  • Put subtitles on recorded webinars
  • Edit webinar video( for example - cut the waiting at the beginning)
  • It takes 2-3 hours every other month in 2021

 

For more information please read the full description.

 

 

Design of promotional materials

  • 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.

 

For more information please read the full description.

 

 

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).

 

For more information please read the full description.

 

 

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.

 

For more information please read the full description.

Meet our volunteers

 

 

Margaret Giuliani is the IGA representative for the French Gaucher Association (VML).  

 

Margaret, a type 1 Gaucher patient, is leading an IGA project concerning Gaucher Disease and co-morbidities in the hope of helping to build a community where people can share experience, fears, knowledge etc. As a result, she has learned much from a patient point of view and co-hosted an educational webinar in 2020.

 

Paulina Peña Aragón is the IGA representative for the mexican LSD association "Proyecto Pide un Deseo México".

 

Pali, a type 1 Gaucher patient and has been a part of the IGA's communications taskforce since she was an IGA board member.  She has been a bridge with the hispanic Gaucher community and is always trying to make all IGA content more adapted to their reality and language. Pali believes in the power of teamwork and friendship and tries to make everyone who gets to IGA welcome and part of a big lovely family.