Petition delivered to Government

Samantha Lenik and patients with Pompe and Fabry disease and their supporters delivered the petition to the government yesterday requesting that the government look under urgency to ensure Pharmac has enough funds to properly deliver on the rare disease drug policy.

Here the the media interviews:

The reading of the petition in the House

Radio NZPatients Call for Funding of Rare Disease Medicines

NZ Herald: Children of women with rare disease ask Santa for mummy’s medicine

Rodney Times: Petition for rare disease funding delivered to Parliament

CheckOrphan (link no longer active): The presentation of the petition made it to CheckOrphan

Samantha and the affected patients along with LDNZ thank everyone who participated in the signing of the petition and left some truly amazing comments that we will be forwarding onto Pharmac. Thank you everyone.