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Medicines Development

Medicines Development

The HRB presentation on European Data Protection Regulation is available here

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*  IPPOSI AGM Sept 16, 2014 register here.

* Connected Health - November, more details soon

Education

Education

Annual Roundtable Outcome Report download here.

National Plan for Rare Diseases download here

IPPOSI was contacted by a man with a rare condition, 'tracheabroncheomalacia', and he is seeking advice / assistance from anyone who might have direct experience of this condition, or related conditions (laryngomalacia and tracheomalacia), or who has experience of severe respiratory issues and accessing treatment for same.

The man in question is seeking a referral for an operation, however he needs to lose weight for this, and as he is on 24-hour oxygen, exercise is not possible, so any advice on weight loss might also be useful.

Please contact This email address is being protected from spambots. You need JavaScript enabled to view it. if you think that you can help.