Establish a body to support Rare conditions in Australia Petition: Signature List Feed

Mrs Joanna Butler [Signature #348]

Thu, 10 Jan 2013 09:22:03 UTC

Mrs Joanna Butler, Mandurah, Western Australia, Australia

My husband has a recent diagnosis of aHUS

Mrs Anonymous [Signature #347]

Wed, 16 Mar 2011 07:16:09 UTC

Anonymous

mrs ursula vale [Signature #346]

Tue, 8 Feb 2011 01:59:17 UTC

mrs ursula vale, Cairns, QLD, Australia

mrs sue mcmechan [Signature #345]

Sat, 29 Jan 2011 09:24:46 UTC

mrs sue mcmechan

ms Christine Robertson [Signature #344]

Tue, 30 Nov 2010 05:07:16 UTC

ms Christine Robertson

my son has ASD as well as a sub deletion of chromosone one we know he has it but what it means no one can tell me no funding

Michaela Townsend [Signature #343]

Sun, 28 Nov 2010 08:14:40 UTC

Michaela Townsend

Ms Larissa Tyler [Signature #342]

Wed, 20 Oct 2010 06:56:17 UTC

Ms Larissa Tyler, ACT, Canberra, Australia

I am a sufferer of rare disease and remain undiagnosed. Without the support sought through this petition, I am not only fighting a disease in isolation, I am fighting day after day for my human rights, and my dignity. Australia must join other forward-thinking nations in providing a national plan effective in supporting individuals with rare conditions. It is common sense a national clinic of excellence be developed in support of the medical community and patients. We have the resources to act.

mrs peta perrie [Signature #341]

Tue, 5 Oct 2010 09:30:12 UTC

mrs peta perrie, sa, Australia

Ms Victoria Abraham [Signature #340]

Thu, 30 Sep 2010 08:36:17 UTC

Ms Victoria Abraham

I am so grateful that my son who has autism can access early intervention programs with govt funding. I strongly feel that all children in Australia with a disability should be able to access early intervention programs.

Mrs Louise McDermid [Signature #339]

Wed, 22 Sep 2010 03:35:53 UTC

Mrs Louise McDermid, Queensland, Australia

Belinda Cross [Signature #338]

Fri, 20 Aug 2010 06:08:06 UTC

Belinda Cross, Australia

Ms Denise Foley [Signature #337]

Mon, 16 Aug 2010 07:09:31 UTC

Ms Denise Foley, Greenslopes, Qld

Ms Anonymous [Signature #336]

Sun, 15 Aug 2010 06:17:16 UTC

Anonymous, Springvale South, Victoria, Australia

Families can break down without support - in a country like Australia, how can we not have one exist for parents of rare diseases. I would like to think that if I, or anyone that I know or love, are in this situation, that there would be good quality care and support for the child and the parents.

Mrs Karen Marshall [Signature #335]

Wed, 28 Jul 2010 04:40:55 UTC

Mrs Karen Marshall, Australia

Mrs Karina Harris [Signature #334]

Tue, 22 Jun 2010 06:14:24 UTC

Mrs Karina Harris, Wamberal, NSW, Australia

mrs kerry mcgugan [Signature #333]

Tue, 22 Jun 2010 02:12:00 UTC

mrs kerry mcgugan, mudgeeraba, qld, Australia

I also feel for Jade not been able to communicate through speech, its really hard to find answers for things that happen to your child when your not around as people can not be trusted.

cass evans [Signature #332]

Sat, 19 Jun 2010 11:57:32 UTC

cass evans, Australia

i support this group as a mother with multiple sclerosis and hope my children never get it.
i know a child with angle man disease,
one with crudisha (sounds like) and many with autism.

Ms Sue SMITH [Signature #331]

Sat, 19 Jun 2010 08:56:36 UTC

Ms Sue SMITH, Box Hill, Victoria

Anonymous [Signature #330]

Sat, 19 Jun 2010 08:27:30 UTC

Anonymous

Mrs Jeanie-Maree Hughes [Signature #329]

Sat, 19 Jun 2010 06:15:53 UTC

Mrs Jeanie-Maree Hughes

Mss Nicole Pearson [Signature #328]

Fri, 18 Jun 2010 11:50:19 UTC

Mss Nicole Pearson, Australia

Rear disorders are costing the tax payers money for their medical and carers centre link payments. If we can find a cure then this would eliminate the need for such expenses.

Mrs Jill Cornish [Signature #327]

Fri, 18 Jun 2010 07:51:50 UTC

Mrs Jill Cornish, Australia

Miss Lori Burke [Signature #326]

Fri, 18 Jun 2010 06:11:01 UTC

Miss Lori Burke, Australia

Mrs Kylie Allen [Signature #325]

Fri, 18 Jun 2010 01:58:39 UTC

Mrs Kylie Allen, Australia

Dr Anne Murphy [Signature #324]

Fri, 4 Jun 2010 06:41:57 UTC

Dr Anne Murphy

mrs Kristen Diffey [Signature #323]

Fri, 4 Jun 2010 08:42:51 UTC

mrs Kristen Diffey, Shepparton, Victoria, Australia

Mrs Anonymous [Signature #322]

Fri, 21 May 2010 06:14:58 UTC

Anonymous, Australia

Mrs Mitzi Polacsek [Signature #321]

Mon, 10 May 2010 01:02:38 UTC

Mrs Mitzi Polacsek, Australia

Mrs Meredith Matthews [Signature #320]

Thu, 8 Apr 2010 10:53:49 UTC

Mrs Meredith Matthews, Australia

The need for greater awareness of rare diseases is urgent. Too many families such as ours have suffered greatly unnecessarily & that suffering continues & discrimination adds to our burden. Time to change.

Ms Sara Trafford-Jones [Signature #319]

Tue, 6 Apr 2010 05:35:43 UTC

Ms Sara Trafford-Jones

Mrs Anita Armstrong [Signature #318]

Sun, 4 Apr 2010 04:47:27 UTC

Mrs Anita Armstrong

Although rare diseases only effect a small number of children directly, their impact is felt by many people indirectly. Family, friends, their carer's, the medical professions & their community. The financial impact from their long-term health needs alone should be enough for the government to sit up & listen. This is one small step to establish an overseeing organisation to help co-ordinate the future direction of research, support and hopefully finding cures for these conditions.

mrs paulette solomon [Signature #317]

Tue, 23 Mar 2010 11:27:01 UTC

mrs paulette solomon, mosgiel, dunedin, New Zealand

Miss Jackie Phibbs [Signature #316]

Tue, 23 Mar 2010 08:42:47 UTC

Miss Jackie Phibbs

Mrs Anonymous [Signature #315]

Sun, 21 Mar 2010 05:55:57 UTC

Anonymous, highgate hill, QLD, Australia

mrs judi brown [Signature #314]

Tue, 16 Mar 2010 07:56:07 UTC

mrs judi brown, atherton, qld, Australia

Rare conditions in health ultimately affect everyone. Children need to be diagnosed so that they can be given the best chances in life like every other child.

Mrs Megan Gavin [Signature #313]

Mon, 15 Mar 2010 03:04:29 UTC

Mrs Megan Gavin, Nelson, New Zealand

Mrs Anonymous [Signature #312]

Sun, 14 Mar 2010 11:16:17 UTC

Anonymous

Mr. Steve McKean [Signature #311]

Sun, 14 Mar 2010 08:02:10 UTC

Mr. Steve McKean, Australia

Anonymous [Signature #310]

Sun, 14 Mar 2010 05:26:10 UTC

Anonymous

Mr Jeremy Stowell [Signature #309]

Sat, 13 Mar 2010 06:54:21 UTC

Mr Jeremy Stowell, Australia

Mrs Sarah Redwood [Signature #308]

Sat, 13 Mar 2010 06:30:09 UTC

Mrs Sarah Redwood

Mrs Tracy Malthus [Signature #307]

Sat, 13 Mar 2010 03:54:44 UTC

Mrs Tracy Malthus

Mra Valerie Adoberg [Signature #306]

Sat, 13 Mar 2010 11:07:13 UTC

Mra Valerie Adoberg, Wongaling Beach, Queensland, Australia

Mrs Nicole Hams [Signature #305]

Fri, 12 Mar 2010 08:24:21 UTC

Mrs Nicole Hams, Cairns, QLD

Mr Andrew Scott [Signature #304]

Fri, 12 Mar 2010 06:44:09 UTC

Mr Andrew Scott, Australia

ms Joan Hoffman [Signature #303]

Fri, 12 Mar 2010 06:38:04 UTC

ms Joan Hoffman

mrs & mr janis & Dahlson halidone [Signature #302]

Fri, 12 Mar 2010 06:37:12 UTC

mrs & mr janis & Dahlson halidone

It is so much easier to deal with something when you know what it is you are dealing with.

Karon Libby [Signature #301]

Fri, 12 Mar 2010 05:54:53 UTC

Karon Libby

Mrs Hayley Reille [Signature #300]

Fri, 12 Mar 2010 01:05:56 UTC

Mrs Hayley Reille, New Zealand

Anonymous [Signature #299]

Fri, 12 Mar 2010 06:26:53 UTC

Anonymous, QLD, Australia

Mrs Sarah Becker [Signature #298]

Fri, 12 Mar 2010 03:20:37 UTC

Mrs Sarah Becker, Gold Coast, Qld, Australia

Mrs Angeline Christie [Signature #297]

Fri, 12 Mar 2010 12:38:31 UTC

Mrs Angeline Christie

Mrs Beverley Marshall [Signature #296]

Fri, 12 Mar 2010 12:20:38 UTC

Mrs Beverley Marshall

Ms Bethany Mooney [Signature #295]

Fri, 12 Mar 2010 12:02:17 UTC

Ms Bethany Mooney, Palmerston North, New Zealand

Mr Alex Adoberg [Signature #294]

Thu, 11 Mar 2010 11:38:49 UTC

Mr Alex Adoberg, Atherton, Queensland, Australia

Same as Juana Adobergs' comment

Mr Robin Wells [Signature #293]

Thu, 11 Mar 2010 11:33:35 UTC

Mr Robin Wells, Australia

Mrs Juana Adoberg [Signature #292]

Thu, 11 Mar 2010 11:04:30 UTC

Mrs Juana Adoberg, Atherton, QLD, Australia

Our 12 month old son has an undiagnosed condition and we're still searching for an answer - please help!

Mrs Beth Engwirda [Signature #291]

Fri, 5 Mar 2010 04:26:50 UTC

Mrs Beth Engwirda, Ballina, NSW, Australia

Mrs Terri Burtina [Signature #290]

Thu, 4 Mar 2010 04:20:35 UTC

Mrs Terri Burtina, Cairns, Queensland, Australia

Mr Casey Stewart [Signature #289]

Wed, 3 Mar 2010 07:05:12 UTC

Mr Casey Stewart, Australia

Mrs Kelli Costa [Signature #288]

Tue, 2 Mar 2010 04:02:28 UTC

Mrs Kelli Costa, Whiterock, QLD, Australia

After losing our daughter Willow at 13 days old we had to turn to American websites to find out information about her conditon HLH. An Australian organisation is needed to help families going through this ordeal to help them cope and understand what they are going through. We are not a developing country so why do we not already have a governing board for rare diseases??

Mr David Barker [Signature #287]

Tue, 2 Mar 2010 12:11:25 UTC

Mr David Barker, Cooktown, Queensland, Australia

Why is there no official coordinated approach to rare diseases by the Australian government?

Mr Matt Smith [Signature #286]

Mon, 1 Mar 2010 05:10:54 UTC

Mr Matt Smith, Kuranda, Qld, Australia

ms Joann Cochran [Signature #285]

Mon, 1 Mar 2010 03:28:47 UTC

ms Joann Cochran, Shepparton, Victoria, Australia

Ms Julie Cox [Signature #284]

Sun, 28 Feb 2010 03:51:19 UTC

Ms Julie Cox, Coonabarabran, NSW, Australia

By having this organisation, each family will know that they are not facing their circumstances alone; they will have point of contact; and there will be a greater chance of raising the required funds for essential research.

Mrs Amber Stewart [Signature #283]

Sat, 27 Feb 2010 10:24:54 UTC

Mrs Amber Stewart, Australia

mrs diane parish [Signature #282]

Sat, 27 Feb 2010 09:37:22 UTC

mrs diane parish, rutherford, nsw 2320, Australia

my daughter has ring form 13 one of 20 in the world.she should be disfigured. she is living a normal and healthy life and she is 34 years old.she has this condition since she was 6 years old. have had lots of support through the out year feel free to contact me on this matter if you wish to

Mrs JAN SMITH [Signature #281]

Fri, 26 Feb 2010 02:54:07 UTC

Mrs JAN SMITH

Mrs Emma Oxenham [Signature #280]

Wed, 24 Feb 2010 02:05:05 UTC

Mrs Emma Oxenham, Sydney, Australia

Mr Brendan Smith [Signature #279]

Wed, 24 Feb 2010 12:21:17 UTC

Mr Brendan Smith

Mrs Kristine Piotrowski [Signature #278]

Tue, 23 Feb 2010 11:31:09 UTC

Mrs Kristine Piotrowski, Australia

Miss Anonymous [Signature #277]

Tue, 23 Feb 2010 06:10:05 UTC

Anonymous, Australia

Karen Cooper [Signature #276]

Tue, 23 Feb 2010 12:02:11 UTC

Karen Cooper, Bendigo, Australia

Ms Ondine Sherman [Signature #275]

Tue, 23 Feb 2010 05:13:13 UTC

Ms Ondine Sherman, Sydney, NSW, Australia

Mrs Sandra Flack [Signature #274]

Tue, 23 Feb 2010 03:24:30 UTC

Mrs Sandra Flack, Australia

Mrs Kristin Haythorne [Signature #273]

Tue, 23 Feb 2010 12:44:57 UTC

Mrs Kristin Haythorne

Mrs Elaine Alaia [Signature #272]

Mon, 22 Feb 2010 11:27:19 UTC

Mrs Elaine Alaia, Australia

Mrs Seaason Whitney [Signature #271]

Mon, 22 Feb 2010 11:21:38 UTC

Mrs Seaason Whitney, Manoora, Cairns QLD, Australia

Mr Chris Phillips [Signature #270]

Mon, 22 Feb 2010 11:17:56 UTC

Mr Chris Phillips

Sid Mansukhani [Signature #269]

Mon, 22 Feb 2010 08:00:07 UTC

Sid Mansukhani

Miss Dina Zaitman [Signature #268]

Mon, 22 Feb 2010 07:26:24 UTC

Miss Dina Zaitman

Miss Victoria Gehrig [Signature #267]

Mon, 22 Feb 2010 07:08:55 UTC

Miss Victoria Gehrig, Australia

Miss Wei Jiun Phang [Signature #266]

Mon, 22 Feb 2010 06:26:17 UTC

Miss Wei Jiun Phang

Ms Laura Petruccelli [Signature #265]

Mon, 22 Feb 2010 05:52:44 UTC

Ms Laura Petruccelli, Essendon, VIC, Australia

Mr Andy Jones [Signature #264]

Mon, 22 Feb 2010 05:51:20 UTC

Mr Andy Jones

Ms Marteen Burger [Signature #263]

Mon, 22 Feb 2010 05:34:53 UTC

Ms Marteen Burger

Mr Grant Henderson [Signature #262]

Mon, 22 Feb 2010 05:24:22 UTC

Mr Grant Henderson, Marrickville, NSW, Australia

Ms Alicent Wong [Signature #261]

Mon, 22 Feb 2010 05:21:55 UTC

Ms Alicent Wong

Miss Alex Aisthorpe [Signature #260]

Mon, 22 Feb 2010 05:20:45 UTC

Miss Alex Aisthorpe

Mr Gavin Heron [Signature #259]

Mon, 22 Feb 2010 05:20:04 UTC

Mr Gavin Heron, Australia

Mr Daniel Collado [Signature #258]

Mon, 22 Feb 2010 05:15:17 UTC

Mr Daniel Collado, Australia

Rachelle Moore [Signature #257]

Mon, 22 Feb 2010 05:08:05 UTC

Rachelle Moore

Mr. Calum Ludwig [Signature #256]

Mon, 22 Feb 2010 05:07:59 UTC

Mr. Calum Ludwig

Anonymous [Signature #255]

Mon, 22 Feb 2010 05:07:52 UTC

Anonymous, Australia

Mr Stuart Sheridan [Signature #254]

Mon, 22 Feb 2010 05:06:03 UTC

Mr Stuart Sheridan, Turramurra, NSW, Australia

Good cause, definitely needs Govt support.

Mr Anonymous [Signature #253]

Mon, 22 Feb 2010 05:04:48 UTC

Anonymous

Mr Anonymous [Signature #252]

Mon, 22 Feb 2010 05:03:16 UTC

Anonymous

Mr Anonymous [Signature #251]

Mon, 22 Feb 2010 05:02:33 UTC

Anonymous, Australia

Ms Michelle O'Neill [Signature #250]

Mon, 22 Feb 2010 05:02:31 UTC

Ms Michelle O'Neill

Steph Webster [Signature #249]

Mon, 22 Feb 2010 05:01:10 UTC

Steph Webster, Australia