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Lysosomal Diseases NZ - Home | ldnz.org.nz Reviews
https://ldnz.org.nz
Lysosomal Diseases New Zealand
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Lysosomal Diseases NZ - 14th October 2014 - Pharmac reject entry and exit criteria for Myozyme
http://www.ldnz.org.nz/resources/access_to_medicines_campaign/14th_october_2014_-_pharmac_reject_entry_and_exit_criteria_for_myrozyme
14th October 2014 - Pharmac reject entry and exit criteria for Myozyme. After 15 long months waiting for Pharmac to make a decision on a trial for Freda and Yakuta using Myozyme, Pharmac again rejects their appeal. In regards to pricing they said: Given the substantially unchanged evidence of clinical benefit and in the absence of any new pricing information, the conclusion of our revised economic assessment is unchanged. Access to Medicines Campaign. 80m new drugs fund for Wales by end of year. Help LDN...
Lysosomal Diseases NZ - Lysosomal Diseases
http://www.ldnz.org.nz/lysosomal_diseases
Lysosomal storage diseases (LSDs) are a group of more than 50 genetically inherited disorders that are characterised by a deficiency of one or more specific lysosomal enzymes. These disorders affect both children and adults. Our list of lysosomal diseases. Has detailed information about each of the diseases as well as live links to medical, research and support group resources on each disease. The Role of the Lysosome. To learn more about Lysosomal Diseases and latest Research see these links below.
Lysosomal Diseases NZ - About LDNZ
http://www.ldnz.org.nz/about_ldnz
This page gives details of our organisation's formal status, Board of Directors, our objectives and tax exempt status, and a link to the latest Annual Report. Our registered name is Lysosomal Diseases New Zealand. We also have an alternative long title as The New Zealand Lysosomal Storage Diseases Trust). We are a registered Charitable Trust with a certificate of incorporation under the Charitable Trusts Act 1957, issued by the Ministry of Commerce on 18th April 2000 (certificate WN/1032411). To work co-...
Lysosomal Diseases NZ - Disclaimer
http://www.ldnz.org.nz/disclaimer
80m new drugs fund for Wales by end of year. A new 80m fund to help patients in Wales with life-threatening illnesses get quicker access to innovative and new medicines has been confirmed. Read more. Researchers find conceivable alternative way to treat Pompe disease. Lysosomal Diseases New Zealand.
Lysosomal Diseases NZ - 27th Feb 2015 - Pharmac in Negotiations over Rare Disorder Medicine
http://www.ldnz.org.nz/resources/access_to_medicines_campaign/27th-feb-2015-pharmac-in-negotiations-over-rare-disorder-medicine
27th Feb 2015 - Pharmac in Negotiations over Rare Disorder Medicine. Pharmrac released their latest announcement today stating that they are still in negotiations with several drug companies in relation to orphan drug access. This announcement comes on the eve of International Rare Disease Day. Although this is not the message we had hoped for it’s good news that they are still talking with the companies. Access to Medicines Campaign. 80m new drugs fund for Wales by end of year. Help LDNZ support New Zea...
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Access to Medicines Coalition - Home
http://www.atmcoalition.org.nz/home
Access to Medicines Coalition. Explore the SUBGROUP NAME site. On Pharmac's decision criteria consultation. About errors and omissions in consultation document. Equitable and affordable Access To Medicines for all. Members of ATM include:. Asthma New Zealand/The Lung Association. Balance NZ Bipolar and Depression Network. Breast Cancer Aotearoa Coalition. Cystic Fibrosis Association New Zealand. IDFNZ - the Immune Deficiency Foundation. Leukaemia and Blood Foundation of New Zealand.
Network Links | Battens Disease Support & Research Association
http://battens.org.au/network-links
Skip to main content. The Australian Chapter of BDSRA. What is Batten Disease. What is Batten Disease. What are the forms of NCL? How many people have these disorders? Clinical course of Batten disease. How are NCLs inherited? What causes these diseases? Is there any treatment? Australian and NZ development? YOU CAN FIND US NOW ON. LDNZ (Lysosomal Diseases New Zealand). BT4K (Better Treatment For Kids NSW). BIOMARIN (Batten Disease Research Partners). USA’s Batten Disease Support and Research Association.
Batten Disease - NORD (National Organization for Rare Disorders)
http://rarediseases.org/rare-disease-information/rare-diseases/byID/259/viewFullReport
Information & Resources. Resources & FAQs. State Health Insurance Information. Information for Your Doctor. News About Patient Recruitment. Help to Access Medications. Find a Patient Organization. Find a Patient Meeting. Start a Patient Organization. Other Ways to Partner. About the Corporate Council. Council Code of Conduct. Education & Research Programs. Natural Histories Patient Registry. Resources for Medical Professionals. Resources for your Patients. Join the Rare Action Network. For years, the ter...
MPS 7 for Patients | Lysosomal Storage Disorder | Metabolic | Rare Disease | Ultragenyx
http://www.ultragenyx.com/patients/mps7
What is MPS 7? Mucopolysaccharidosis type 7 (MPS 7) is an inherited metabolic disorder. Like other types of MPS disease, MPS 7 is caused by an enzyme deficiency in the processing of glycosaminoglycans (GAGs). In MPS 7, patients lack the enzyme, beta-glucuronidase, which is required for the degradation of the GAGs dermatan sulfate (DS), heparan sulfate (HS), and chondroitin 6 sulfate (CS). There are no approved specific treatments for MPS 7. US National MPS Society. Jayson Dallas, M.D. Daniel G. Welch.
Ben's Dream - Outside Links
http://www.bensdream.org/link.html
The Children's Medical Research Foundation (CMRF). The Sanfilippo Syndrome Medical Research Foundation. The Sanfilippo Childrens Research Foundation. Jackson Laboratory - Sanfilippo Type B "Naglu" Mice. Jackson Laboratory - Sanfilippo Type A Mice. MPS and Lysosomal Societies. United States MPS Society. Canadian Society for Mucopolysaccharide and Related Diseases. New Zealand Lysosmal Storage Support Group. Australian Society for Mucopolysaccharide and Related Diseases. Online Mendelian Inheritance in Man.
LINK | Brains for Brain
http://b4b.effige.com/link
BRAINS FOR BRAIN Onlus Foundation (B4B). Courses and educational activities. Scientific Documents (Research Area). Patients and Families support. For Physicians and Scientists. Innermed Project – Partners. Courses and educational activities. Scientific Documents (Research Area). Patients and Families support. For Physicians and Scientists. Innermed Project – Partners. Canadian Organization for Rare Disorders ( www.raredisorders.ca. European Brain Council ( www.europeanbraincouncil.org. NTSAD – Nati...
NZORD - Rare disease support group directory
http://www.nzord.org.nz/support-groups
Skip to Primary Navigation. Skip to Secondary Navigation. Skip to Main Content. Skip to Utility Menu. Find a support group. Explore the NZORD site. How we can help. Living with a rare disease. What is a rare disease? Other New Zealanders’ stories. Stories from around the world. Press releases and submissions. Send us your story. Rare disease support group directory. Rare disease support group directory. NZORD has compiled a list of rare disease support groups. Can’t find your group? Phone: 07 896 7452.
Int*l Pompe Day
http://www.worldpompe.org/index.php/international-pompe-day
IPA Board, Advisors and More. IPA Members and Contacts. IPA Reviews and Reports. IPD Gallery 2016 (Uploads). IPD Gallery 2015 (Uploads). IPD Gallery 2014 (Uploads). Funds For Children In Need. The IPA is excited to announce that the international Pompe community has chosen April 15 as the annual International Pompe Day! There are several ways that you can participate:. Upload a photo to the International Pompe Day website. Participate in the International Pompe Day Art Contest! Created: 14 April 2016.
Support and Networks | James
https://jamesmarquardt.wordpress.com/lysomal-diseases-new-zealand
Our journey with Hunter Syndrome (MPS II). Links about MPS II. Lysomal Diseases New Zealand. One Comment on “Support and Networks”. October 8, 2012 at 3:44 am. Have been thinking of you Fiona and finally caught up with your blog yesterday which your mum gave me. What a roller coaster ride you have had. But it is all downhill now. What a brave wee man you have. Best wishes for more fabulous progress – Yvonne. Leave a Reply Cancel reply. Enter your comment here. Address never made public).
Int*l Pompe Day
http://www.worldpompe.net/index.php/international-pompe-day
IPA Board, Advisors and More. IPA Members and Contacts. IPA Reviews and Reports. IPD Gallery 2016 (Uploads). IPD Gallery 2015 (Uploads). IPD Gallery 2014 (Uploads). Funds For Children In Need. The IPA is excited to announce that the international Pompe community has chosen April 15 as the annual International Pompe Day! There are several ways that you can participate:. Upload a photo to the International Pompe Day website. Participate in the International Pompe Day Art Contest! Created: 14 April 2016.
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Lysosomal Diseases NZ - Home
What are lysosomal storage diseases? Lysosomal storage diseases are inherited genetic defects that result in an enzyme deficiency, which prevents cells from performing their natural recycling function. This leads to a variety of progressive physical and/or mental deterioration. Approximately 180 New Zealand families are currently affected. Find out more. Campaign for access to therapies for our diseases. 28th February 2017 - Pharma Company gives up on Pharmac. Rare Disease Epidemiology - 2nd Edition.
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