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The European Working Group on Gaucher Disease (EWGGD) is an independent organisation that hosts a scientific platform for the dissemination of information, through a two-yearly workshop.

 

The aim of the EWGGD is to promote clinical and basic research into Gaucher disease for the ultimate purpose of improving the lives of patients with this disease; it brings together clinicians, scientists and patients in an open forum for discussion on all aspects of the condition. The opportunity for presenting unpublished scientific data as well as free discussion is a central premise of the Group. 

 

To support the attendances of young researchers to attend the EWGGD, travel grants and support with registration fees are provided by the EWGGD Board.  

 

FYMCA is a UK based, for profit organisation that was set up to develop improved rare disease education and services for those in the developing world in collaboration with other charitable organisations to provide enhanced, frontline services.  As of November 2019, FYMCA’s programmes have trained 158 doctors and 227 patients have received a diagnosis from Africa, Latin America, Caucasus and Central Asia. 

 

FYMCA was set up as a dedication to FYMCA director, Chris and Flo’s son, who had a rare disorder without the exact cause ever identified and the name ‘FYMCA’ is made up from the initials of all the family members who each brings unique skills to the company.

 

The IGA are proud to be a partner with FYMCA and have attended and participated in educational meeting isnBotswana, Johannesburg, Cape Town, Morocco and Indonesia.
 

 

The IGA has been the bedrock of support for Gaucher patients and their organsiations throughout  Europe and beyond. Creating an International  community for patient advocacy, education  and support, the IGA has worked tirelessly to promote equality of access to therapies for Gaucher disease and improved the lives of countless patients throughout the world. Through educational initiaives they have supported the development of  clinicians new to Gaucher disease thereby creating longstanding relationships which enable shared good practice and research.Now leading the way with digital inititives they will pioneer a world class patient-led regsitry. The EWGGD has much benefited from asistance, advice and partnership with the IGA. We look forward to working together even more closely in the future, offering mutual support and cooperation for the benefit of Gaucher patients everywhere.  

Derralynn Hughes, Chair of the EWGGD

 

The IGA has been a valued partner especially with our work in poorly resourced countries. Some of the most vulnerable patients are those without a voice and FYMCA believes that knowledge liberates, empowers and gives hope. Our vision is to provide clinicians and other HCP’s with knowledge to diagnose and manage rare disease patients in the face of local challenges.  The IGA has been a true friend to FYMCA,  supporting its work and impact on the lives of rare disease patients. 

Chris Hendriksz, Founder & CEO of FYMCA Medical Ltd

 

The IGA also works closely with pharmaceutical companies within the field of Gaucher disease, often acting as a liaison between industry, researchers, clinicians and the Gaucher community.

 

 

Collaborating with IGA means being educated concerning the wellbeing and unmet needs of Gaucher patients whilst benefitting from the IGA network of KOLs and expert centres. Together with the IGA neuronopathic Gaucher Global Registry in development, these insights will help to shape the design of therapeutic development strategies focussed on creating safe and efficacious treatments, and reducing the time to market. Engaging IGA members and families in a dialog was an excellent experience to better understand the interest of the community. 

Juliana Bronzova, Oxyrane

 

At Freeline, we focus on the development of innovative gene therapies to create better lives for people with chronic diseases. We are proud to work with the International Gaucher Alliance to ensure that we can best serve patients and their families.  

Nitin Patel, Freeline

 

Gain Therapeutics SA is proud to contribute and share IGA’s mission to raise awareness, empower patients and ensure that medical research is focused on patients’ unmet needs. Through this partnership, Gain Therapeutics can rely on a wide network of professionals and carers that can support and guide the development of novel small-molecule brain-penetrant therapeutics with the aim of addressing neurological manifestations in patients with Gaucher disease and related CNS disorders.  

Natalia Perez, Gain Therapeutics