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Patient Associations Genzyme Therapeutics works with and supports the patient associations listed below: • Financial support of Patient Information Packs, leaflets and posters • Financial support to enable development of the website and to run the helpline Children Living with Metabolic Disease (Climb) • Financial support of annual HEART UK Conference. • Financial support for the rollout of the new FH guidelines in the form of Clinical Workshops and guideline summaries • Genzyme and Myeloma UK have agreed to work together and exchange information on the management of Multiple Myeloma in the UK. There is no financial support currently in place. The Association of Glycogen Storage Diseases (AGSD) • Financial Support of the AGSD Annual Patient Meeting. • Financial support for a Family Support Officer providing a national point of contact for information and advice for those affected by Pompe disease • Financial support of National and Regional Patient Meetings. • Financial support of patient surveys. • Financial support for a Senior Patient Advocacy Worker providing support and advice to MPS1 and Fabry patients Welsh Kidney Patient Association |
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