Genzyme in the UK

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Genzyme Announces UK Opening of Expression of Hope Art Exhibition at Rare Diseases Conference

Date: October 9, 2015

Oxford, UK. ­– Genzyme, a Sanofi company,  welcomes the UK opening of the international Expression of Hope exhibition at the Association for Glycogen Storage Disease UK (AGSD-UK) annual conference 2015 in Wyboston Lakes, Bedfordshire, UK. The exhibition marks one year since 19 AGSD-UK conference delegates, including people with rare diseases and their family members, took part in an art workshop and submitted their entries to the Expression of Hope programme. The travelling art exhibition features 25 pieces of selected artwork and includes three entries from artists in the UK, including those representing the rare diseases Fabry disease, Niemann-Pick and Pompe disease. One of these artists, three year old Poppy French from Southampton, UK, took part in last year’s art workshop. She says, “My name is Poppy and my mummy has Pompe Disease. She never dreamed she’d be able to have a baby, but here I am, keeping her busy and making her happy. My picture is a big bug!”

Expression of Hope is a global disease awareness programme featuring works of art created by the community of people affected by lysosomal storage disorders (LSD). This unique programme encourages anyone affected by an LSD to create and submit a work of art that expresses their experiences of living with these rare, inherited diseases. 

“We are delighted to host the Expression of Hope exhibition as these works of art paint a vivid picture of the individual challenges that people living with rare diseases face and overcome. We hope that the exhibition will play a part in educating more people about these often chronic and life-threatening conditions that frequently go under the radar,” said Allan Muir, Development Director, Association for Glycogen Storage Disease UK.

The exhibit is travelling to patient meetings and conferences around the world this year and will continue its journey in 2016. In the UK, the exhibit visited the Niemann-Pick Conference last month and will travel to the Gaucher Association family conference (13-15 November, Manchester) and the Fabry International Network (FIN) meeting (19-21 November, Chesham). All of the 168 artwork submissions, including the 25 exhibit selections, can be viewed at www.expressionofhope.com

Working in collaboration with patient advocacy organisations around the world, Expression of Hope received submissions from artists of all ages and artistic ability, including family members, friends and healthcare workers from over 20 countries. The exhibit artwork was selected by a panel of judges with backgrounds in art and advocacy located in the Massachusetts area, where Genzyme has its headquarters. This is the third Expression of Hope campaign, with nearly 500 artwork submissions received since the programme was first launched by Genzyme Rare Disease Patient Advocacy in 2006.

“Artistic expression helps cross barriers created by geography, language, physical ability and age,” said Brendan Martin, General Manager for Genzyme UK & Ireland. “We’re delighted the art exhibition is touring the rare disease community in the UK. By sharing their reflections with the world, the Expression of Hope artists challenge and motivate thousands of people to better understand the experience of living with an LSD.”

Lysosomal storage disorders (LSDs) are a group of more than 40 diseases. Each is caused by a genetic problem that results in the deficiency or malfunction of particular enzymes needed to remove waste material from cells. These waste molecules then accumulate, or are stored, in cell lysosomes (smaller compartments within the cells), disrupting cell function and causing a variety of symptoms. All LSDs are progressive, meaning that without treatment, they worsen over time. Each LSD is caused by a different genetic problem and enzyme deficiency. Because these disorders are extremely rare – even the most common, Gaucher disease, only affects an estimated 10,000 people worldwide – it can be difficult to find information about them.

About Expression of Hope

Expression of Hope is a global programme of inspiration and awareness featuring works of art by the lysosomal storage disorder community. In collaboration with LSD patient organisations around the world, Genzyme launched the Expression of Hope programme in 2006 to give those impacted by lysosomal storage disorders (LSDs) the opportunity to raise awareness of these rare genetic diseases. More than 100 patients and caregivers expressed their unique stories through their original pieces of artwork. Building on that initial success, Genzyme launched the second Expression of Hope programme in 2009, and once again the global community responded with enthusiasm, creativity and insight. Our third Expression of Hope programme further reinforces the commitment of individuals affected by lysosomal storage disorders to building awareness and expressing their unique stories through art. www.expressionofhope.com

About Genzyme, a Sanofi Company

Genzyme has pioneered the development and delivery of transformative therapies for patients affected by rare and debilitating diseases for over 30 years.  We accomplish our goals through world-class research and with the compassion and commitment of our employees. With a focus on rare diseases and multiple sclerosis, we are dedicated to making a positive impact on the lives of the patients and families we serve. That goal guides and inspires us every day. Genzyme’s portfolio of transformative therapies, which are marketed in countries around the world, represents groundbreaking and life-saving advances in medicine.

As a Sanofi company, Genzyme benefits from the reach and resources of one of the world’s largest pharmaceutical companies, with a shared commitment to improving the lives of patients.

About Genzyme in the UK

Genzyme is a significant force in the biotechnology sector in the UK focused on improving the lives of patients with rare genetic diseases and multiple sclerosis. First established in the UK in 1981, Genzyme employs almost 110 people working out of our commercial base in Oxford, marketing products for the treatment of patients with chronic debilitating diseases. These include genetic diseases such as lysosomal storage disorders (LSDs), characterised by a lack of enzymes essential to healthy biological processes, and multiple sclerosis, a complex disease affecting the central nervous system. Our portfolio also includes a therapy which aids in the management of thyroid cancer. Learn more at www.genzyme.co.uk

Genzyme® is a registered trademark.  All rights reserved

Featured Artwork:


Big Bug
Artist: Poppy French
LSD Represented: Pompe Disease
Country: United Kingdom

My name is Poppy and my mummy has Pompe Disease. She never dreamed she’d be able to have a baby, but here I am, keeping her busy and making her happy. My picture is a big bug!


The Colours of the Penguins
Artist: Matt Sheldon
LSD Represented: Niemann-Pick Disease
Country: United Kingdom

These penguins show the emotions people feel if they have been diagnosed with life-shortening diseases. The yellow penguin represents courage and bravery. It tells us that we should not be scared, even in the scariest of times. The pink penguin shows love and care from family and friends who will help you in the hard times you face. The final penguin is the most important, because it does not need a fancy colour to be amazing. It is just itself, and that is the most amazing of all.

My name is Matt, and my cousin has Niemann-Pick type C. She is a very brave girl, and I love her very much!


Walking in Sunshine
Artist: Charlotte and Rachel Matthews
LSD Represented: Fabry Disease
Country: United Kingdom

Charlotte (4) and I (39) painted this picture together and it truly encapsulates our journey with Fabrys disease. Since Charlotte and her dad's diagnosis 2 years ago, we have been on quite a journey with hills to climb and new scenery to see. We chose however, as a family, to embrace the life we have been given - to walk in the sunshine and try to forget about the rain. We chose to reflect on this as a blessing, to grab every moment by both hands and live life to the very fullest, whilst we can. We hope our painting reflects the path we have chosen to take on this unexpected journey.


Poppy with her grandmother at the art workshop held at AGSD 2014

Date of Preparation October 2015

GZUK.XLSD.15.10.0506


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Genzyme Therapeutics Ltd
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Oxford Business Park South
Oxford
OX4 2SU
Tel: +01865 405200
Fax: +01865 774172
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Genzyme Ltd, Haverhill Operations
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Tel: +01440 703522
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