IGA January Newsletter


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Newsletter

January 2022

**THE COUNTDOWN IS ON**

Launching soon!

The International Gaucher Alliance will be announcing the launch of the GARDIAN registry for people with Neuronopathic Gaucher disease in the coming weeks, and you could be part of it.

The GARDIAN registry will track information about the health status of people with type 2 and type 3 (nGD) Gaucher disease with the aim of increasing understanding and improving care

What is it?
How can it improve patient care?
Who can take part?

Find out the answers to your questions in our new FAQ.

And follow us on social media so you

don't miss the launch announcement.

Introducing our new blog

2022 will be an exciting year for the IGA.

In order to help us to keep our members and supporters up to date with everything that is happening, we have created a blog which will allow members of the IGA board, staff and volunteers to post personal reflections about their work and the activities of the IGA, as well as thoughts on rare diseases and related topics.

The blog will be updated on an occasional basis, and links to new posts will be included on our website and in our newsletter.

In the latest post, IGA Chair Biljana Jovanović reflects on the IGA Board meeting that was held last weekend in Belgrade, Serbia, and online.

Read the blog

New Vice-Chair

Meet our new board Vice-Chair Aviva Rosenberg

Aviva is a health care attorney based in Pennsylvania. She has practiced health law throughout the United States and taught as an adjunct professor at several universities.

Aviva was diagnosed with Gaucher disease at age 27, following 20 years of symptoms with no answers. Her son, Eli, also has Type I Gaucher disease.

Aviva's passion is educating about genetic diseases and screenings and talking about her personal journey with Gaucher disease, including the need to shorten patients’ diagnostic results.

She lives with her husband and three fabulous boys in Pittsburgh, Pennsylvania and is so excited to be part of the IGA.

Aviva said, "I’m honored to take on the role of Vice-Chair and continue to serve the international Gaucher community with the wonderful IGA team."

IGA CEO and patient advocate Tanya Collin-Histed will be hosting a breakout session during Findacure's International Rare Disease Showcase from 1-3 February 2022. The session is titled Building an international patient group: achieving a global reach with limited resources.

Mental health webinar

The IGA is hosting an interactive workshop for members in the new year: ‘Supporting your community’s mental health needs’.The workshop is hosted by Kym Winter, Clinical Director and CEO of RareMinds. The aim is to explore with Patient Leaders the development of resources and support for their particular patient community that tackle the emotional and psychological challenges of living with Gaucher disease.

‘Starting where you are’ means this workshop will not only share data on the unique psychosocial needs of rare disease patients and families, but also make time to explore in small groups with other leaders the needs of your own unique community. It will allow the opportunity to review your existing provision and explore ideas with others about beginning - or developing - culturally sensitive resources relevant to your own country and healthcare system.

Please note this meeting is for IGA representatives or patients/carers of member organisations only. The main presentation of this workshop will be recorded and uploaded to our YouTube channel.

International Gaucher Alliance

8 Silver Street, Dursley
United Kingdom

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