The Australian NPCD Foundation needs your help sign now

There are 9 known cases of NPCD in Australia that are currently recieving the drug MIGLUSTAT / ZAVESCA as a treatment option on a "compassionate use" status.

The Australian NPCD Foundation Inc and the drug company Actelon are submitting another request to the Government for PBAC (Pharmaceutical Benefits Advisory Committee) approval.
We have just been advised that we have a deadline of 5th October 2011.

Please read this statement from Mandy Jacobs, mother of 2 boys that have NPCD.

"I have two weeks today to try and convince the Australian government that the 9 patients living with NPC in Australia, having the ONLY treatment drug available currently on Compassionate Use program to prolong their lives with Npc Disease, to grant us PBAC Approval.
Yes there are only 9 of us in this nation and the Governement has failed the last 2 attempts to see that their lives are worthy of spending money on... If i fail, we risk loosing the drug in Australia for those 9 patients. two of which are my babies... :(
So If I seem a bit pissed at the world, thats why!"

Learn more about NPC www.npcd.org.au

Sign The Petition

Sign with Facebook
OR

If you already have an account please sign in, otherwise register an account for free then sign the petition filling the fields below.
Email and the password will be your account data, you will be able to sign other petitions after logging in.

Privacy in the search engines? You can use a nickname:

Attention, the email address you supply must be valid in order to validate the signature, otherwise it will be deleted.

I confirm registration and I agree to Usage and Limitations of Services

I confirm that I have read the Privacy Policy

I agree to the Personal Data Processing

Shoutbox

Who signed this petition saw these petitions too:

Sign The Petition

Sign with Facebook
OR

If you already have an account please sign in

Comment

I confirm registration and I agree to Usage and Limitations of Services

I confirm that I have read the Privacy Policy

I agree to the Personal Data Processing

Goal
434 / 1000000

Latest Signatures

  • 12 March 2013434. Maxfield
    I support this petition. 100%
  • 29 June 2012433. Robin Du (unverified)
    I support this petition
  • 08 June 2012432. Leah Fitzpatrick (unverified)
    I support this petition
  • 20 February 2012431. Felicity Kelly (unverified)
    I support this petition - A good friend has this disease. :(
  • 15 February 2012430. Naomi McDonald
    I support this petition
  • 01 February 2012429. Rhoda (unverified)
    I support this petition
  • 06 November 2011428. Carolyn Richards
    I support this petition
  • 06 November 2011427. Rebecca Stewart
    I support this petition
  • 06 November 2011426. Kristina Royall
    I support this petition
  • 05 November 2011425. wendy Bond
    I support this petition
  • 25 October 2011424. Rebekah Corrigan (unverified)
    I support this petition
  • 17 October 2011423. David Whybird
    I support this petition
  • 16 October 2011422. izy dickens
    I support this petition
  • 16 October 2011421. Bernadette Burdett (unverified)
    I support this petition
  • 10 October 2011420. Wendy Humphreys
    I support this petition
  • 09 October 2011419. Peter Woods (unverified)
    I support this petition
  • 08 October 2011418. Dee Reese (unverified)
    I support this petition
  • 08 October 2011417. Glenda wellard (unverified)
    I support this petition
  • 07 October 2011416. Giselle Quesada
    I support this petition
  • 07 October 2011415. Deb Ellis
    I support this petition
  • 07 October 2011414. Bec Mapson
    I support this petition
  • 06 October 2011413. Karthigesu Subendran (unverified)
    I support this petition
  • 06 October 2011412. Thiru Thirunaukarasu (unverified)
    I support this petition
  • 06 October 2011411. Peter Gibbs
    I support this petition
  • 06 October 2011410. Steve Avery
    I support this petition
  • 06 October 2011409. Kathleen Jackson (unverified)
    I support this petition
  • 06 October 2011408. Steven Attard (unverified)
    I support this petition

browse all the signatures

Information

Sharon FanningBy:
HealthIn:
Petition target:
The Australian Government

Petition community:
The Australian NPCD Foundation Inc

Tags

illness, mental health, npc, npcd

Share

Invite friends from your address book

Embed Codes

direct link

link for html

link for forum without title

link for forum with title

Widgets