We will consider the next three petitions together. The first is PE1398, in the name of Alastair Kent, on behalf of Rare Disease UK, on access to therapy for orphan diseases. The second is PE1399, in the name of Allan Muir, on behalf of the Association for Glycogen Storage Disease UK, on equitable access to therapy for Pompe disease. The third is PE1401, in the names of Lesley Logier, on behalf of PNH Scotland, and Professor Peter Hillmen, on behalf of the PNH Alliance.Members have a note by the clerk, the related submissions and a letter from the convener of the Health and Sport Committee in which he expresses his keenness that the petitions are referred to his committee, for understandable reasons.
Official Report · Committee
Current Petitions
Paroxysmal Nocturnal Haemoglobinuria (Access to Therapy) (PE1401)
Speakers
Choose an MSP to read only their contributions- David Stewart Lab 2
- Nanette Milne Con 1
- Anne McTaggart Lab 1
The record
4 contributionsOrphan diseases, their treatment and the difficulties with individual patient treatment requests are, quite rightly, moving high up the political agenda. People with a rare disease have to prove exceptionality within that rare disease. However, I think that the fact that they have a rare disease in the first place makes them fairly exceptional. There are quite significant issues in the petitions. If the Health and Sport Committee is keen to have a look at the petitions, we should refer them to that committee. It could conduct a small inquiry, which would be important.14:15
I think that the petitions would be best placed with the Health and Sport Committee.
Do members agree to refer the petitions, under rule 15.6.2 of standing orders, to the Health and Sport Committee, for consideration of the issues raised?Members indicated agreement.
In this meeting
Everything on 6 Mar 2012 →- 14:00 New Petition Petitions · 8
- 14:00 Current Petitions Petitions · 1
- 14:00 Current Petitions Petitions · 8
- 14:00 Current Petitions Petitions · 7
- 14:00 Current Petitions Petitions · 4
- 14:00 Current Petitions Petitions · 3
- 14:00 Current Petitions Petitions · 7
- 14:00 Current Petitions Petitions · 4
- 14:00 Current Petitions Petitions · 7
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