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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 Project Officer Vesna Aleksovska for more details on how can you can get involved and support the IGA's work. 

Current opportunities

 

Translation

  • We need volunteers for translations from English to one or more languages: Spanish, French, Russian, Arabic, Italian, German, Portuguese, Chinese, Hebrew.
  • Translation of documents, including subtitles for videos and social media posts, to develop and implement activities to support accomplishment of IGA mission and goals in the 2021-2023 strategy.


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.

 

 

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.

 

 

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..

Meet some of 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.

Carine Alsokhn is a Gaucher Patient type 1 from Lebanon. She is a public health officer currently based in Geneva, Switzerland and has experience working with global agencies and collaborating with ministries of health and other relevant national bodies. She previously worked at the Ministry of Public Health in Beirut. She also participated in many awareness campaigns and helped spread the word about Rare Diseases in general and Gaucher Disease in particular, in Lebanon and the region. She is a registered dietitian fluent in three languages Arabic, French and English. She is currently volunteering for the IGA.

Rukiye Kaya

Rukiye Kaya is working in Ankara University, Faculty of Medicine as Teaching Assistant.

 

Being an extended family member of two of Type 3 Gaucher patients, she sought to contribute to public understanding of Gaucher Disease and to awareness on how quality of patients life could be improved. Having BSc in Molecular Biology and Genetics, she is studying inflammation parameters of Gaucher Disease in her PhD Thesis.

My name is Paul Guijt and I am Gaucher patient type 1. Living with Gaucher is balancing life and Gaucher. Enjoying life, I returned to Gaucher to serve others less fortunate than me. Covid provided me with a lot of extra free time. I enjoy working together now with the other Gaucherians while doing what I like best: researching and writing. Gaucher can be fun!

My name is Ann Neirinck, I live in Belgium and work as a paediatric nurse in the Children’s Hospital of Antwerp for the department rare diseases. I take care of two adult patients and one two-year-old on ERT. My involvement with IGA is not so big as I would wish but I know when I need advice about treatment, I can always rely on them. In the past I was able to attend several meetings abroad and it was one of the most exciting moments in my career. I learned so much of what it means to take care of each other and to work voluntarily for the good course. I can only hope they will go on with their work forever and that people with Gaucher and also caregivers learn about their existence.

Jasenka Wagner is type 1 Gaucher patient from Croatia. She is founder and chair of the Croatian Gaucher association and member of the board of the Croatian alliance for rare diseases. She is university professor of human genetics and clinical biochemistry at the Medical faculty in Osijek, Croatia.

Her main motivation for being involved as a volunteer for IGA is raising knowledge and awareness about Gaucher and other rare diseases, as well as improving patients care and quality of life worldwide.

I’m Francisco Carreiro (APL – Portugal), I was born in the Azores islands, Portugal, in 1964 with Gaucher disease! However, only at the age of 21 I had a conclusive diagnosis and only with 36 I’ve started a treatment (ERT), which overturn my life allowing me to be “reborn”. So, I had the chance to start a new “normal” and very active life despite all the major health problems I experienced until that point. Even though, I managed to have a normal educational and professional live, completing a degree on the University of the Azores, in Biology and Geology (teaching), where later I also completed a master’s degree in Business Management/MBA. More recently, I attended an Advanced Program on “Tourism Management”, by the Católica Lisbon Business & Economics school. On the beginning of my professional life I taught, then worked the largest part of my life in commerce (family business) but, more recently, I have dedicated myself to tourism, either as Tour Guide, mainly bike tours and Hiking Tours, either working in a family Guest House. Along with my educational and professional live, I’ve always been linked to associative activities, performing various positions in several associations, such as Clube Motard of S. Miguel as member of the board; Cycling Association of the Azores, as General Assembly President by which I was awarded with the “Title of Honorary Member”; Chamber of Commerce and Industry of Ponta Delgada as member of the board and APL (Portuguese Association of Lysosome Diseases), as General Assembly President. being the representative of Portuguese Gaucher patients at IGA. Along with the work we are starting in Portugal, I wish I might be able to learn more about the advances in science and to be able to help and give more support to all Gaucher patients in Portugal. As well, help IGA with all the possible incomes we might be able to bring to the association.