CYSTINOSIS.COM.AU
Cystinosis - For a Healthy LifeFor a Healthy Life
http://cystinosis.com.au/
For a Healthy Life
http://cystinosis.com.au/
TODAY'S RATING
>1,000,000
Date Range
HIGHEST TRAFFIC ON
Thursday
LOAD TIME
0.8 seconds
16x16
32x32
64x64
128x128
160x160
192x192
PAGES IN
THIS WEBSITE
6
SSL
EXTERNAL LINKS
9
SITE IP
192.154.224.41
LOAD TIME
0.806 sec
SCORE
6.2
Cystinosis - For a Healthy Life | cystinosis.com.au Reviews
https://cystinosis.com.au
For a Healthy Life
cystinosis.com.au
Australian Cystinosis Support Group » What is Cystinosis
http://www.cystinosis.com.au/project/whatiscystinosis
Cystinosis is a Metabolic disease characterised by an abnormal accumulation of the amino acid cystine in various organs of the body such as Kidney, Eye, Muscle, Pancreas, and Brain. Different organs are affected at different ages. The disease is inherited in a autosomal recessive fashion, meaning that each parent of a child with Cystinosis carries one defective gene and one normal gene. The parents never have any signs of the disease. What are the Symptoms? Can Cystinosis be treated? The symptomatic trea...
Australian Cystinosis Support Group » News
http://www.cystinosis.com.au/project/news
Larr; How you can help. Please check back here soon for newsletters. You can also visit our Facebook page for more information. Cystinosis Support Group Australia. Cystinosis Support Group Australia. World map of Cystinosis. Cystinosis Support Group Australia. Rct=j&sa=t&url=http:/ www.huffingtonpost.com.au/2016/08/03/this-boys-happy-dan. Cystinosis Support Group Australia. Cystinosis Support Group Australia. Wwwfacebook.com/john.sanders.796/posts/1169994399725515. Cystinosis Support Group Australia.
Australian Cystinosis Support Group » Links
http://www.cystinosis.com.au/project/links
Larr; Family contacts. What is Cystinosis →. We’ve collated some of the leading websites from around the world that deal with topics relating to the treatment of Cystinosis and and support for families living with the condition. The Cystinosis Foundation, France. Cystinose-Selbsthilfe (Cystinosis Self Help, Germany). CARE: Cystinosis Awareness and Research Effort. Canadian based charity supporting research to improve the quality of life for Cystinosis patients. A USA based charity for Cystinosis research.
Australian Cystinosis Support Group » Thanks
http://www.cystinosis.com.au/project/thanks
Family contacts →. Since our support group has been up and running we have a number of people to thank for their support:. The Northam Lions club of Western Australia. For their donation of a laptop computer. The Apex Club of York Western Australia. For their donation of $100.00. Mr Ted Hughes Medina Western Australia. For his donation of a trip to Paris to attend the International conference on Cystinosis for Sue and Serena Scott. The Macaulay Family- Victoria, Australia. For their donation of $50.00.
Australian Cystinosis Support Group » Doctors
http://www.cystinosis.com.au/project/doctors
These are the doctors in each state who are dealing with or know about cystinosis. Postal Address: GPO Box D184, Perth W.A. 6840. Phone: (08) 9344 8222. Postal Address: GPO Box D184, Perth W.A. 6840. Phone: (08) 9344 8222. Phone: 0408 609 630. Sydney Children’s Hospital. Sydney Children’s Hospital. The New Children’s Hospital. Postal Address: Clayton Rd, Clayton, Victoria 3168. Phone: (03) 9594 6666. Postal Address: Clayton Rd, Clayton, Victoria 3168. Phone: (03) 9594 6666. Phone: (03) 9594 6666.
TOTAL PAGES IN THIS WEBSITE
6
Cystinosis Resources | Elsinosis: Living with Cystinosis
https://elsinosis.com/cystinosis-resources
Elsinosis: Living with Cystinosis. A real life account of beautiful Elsie and how she lives with cystinosis. Australian Cystinosis Support Group. Cystinose Selbsthilfe e.V. Grupo de Suporte à Cistinose Nordeste do Brasil. CRF 2014 Hope Through Research. Day in the Life with Cystinosis. Living with Cystinosis: A Closer Look. Know Cystinosis Whiteboard Animation. What is Nephropathic Cystinosis. Cystinosis Family Canada – Famille cystinose Canada. Parents Of Children With Cystinosis Support. Address never ...
Asociación Mexicana de Cistinosis A.C.
http://www.cistinosis.org.mx/interes.html
Asociación Mexicana de Cistinosis. Nuestro Deseo es Ayudarte. Cystinosis Foundation USA - www.cystinosisfoundation.org. Cystinosis Research Foundation - www.natalieswish.org. Cystinosis Research Network - www.cystinosis.org. Cystinosis Foundation UK - www.cystinosis.org.uk. Cystinosis Australia - www.cystinosis.com.au. Cystinosis Alemania - www.leben-eben.com. Cystinosis Foundation Ireland - www.cystinosis.ie. Cystionosis Nederland - www.cystinose.nl. Cystinosis Francia - www.cystinose.org.
Cystinosis, the Community - RareConnect
https://www.rareconnect.org/en/community/cystinosis
Connecting rare disease patients globally. Search and join a community. Search or start a discussion. Living with a rare disease. Discuss with other patients. Welcome - Cystinosis Community. Cystinosis is a lysosomal storage disease characterized by the abnormal accumulation of the amino acid cystine. Source: Participating patient organizations visible below. Published about 1 month ago. 31 years ago I had the good fortune of giving birth to my first daughter, the most beautiful girl in the world, to me!
Genetic Support Network Victoria (GSNV) - Support Groups - Support Groups
http://gsnv.org.au/support-groups/support-groups.aspx
Genetic Support Network Victoria (GSNV). Find a Genetics Service. Support services for young people. 2016 Annual General Meeting. Our Vision and Mission. Find a genetics clinic or support service. Further information and resources. Resources for parents and families. Cant Find a Group? Genetics in Family Medicine. Taking Part in Research. Genetics in the Media. Cant Find a Group? Support Group / Individual. 4P Aussie Kidz - Helping children with Wolf Hirschhorn Syndrome. Albinism Fellowship of Australia.
Genetic Support Network Victoria (GSNV) - Support Groups
http://gsnv.org.au/support-groups.aspx
Genetic Support Network Victoria (GSNV). Find a Genetics Service. Support services for young people. 2016 Annual General Meeting. Our Vision and Mission. Find a genetics clinic or support service. Further information and resources. Resources for parents and families. Cant Find a Group? Genetics in Family Medicine. Taking Part in Research. Genetics in the Media. Cant Find a Group? Support Group / Individual. 4P Aussie Kidz - Helping children with Wolf Hirschhorn Syndrome. Albinism Fellowship of Australia.
cystinosis.patientcrossroads.org
About Us
https://cystinosis.patientcrossroads.org/en/home/about-us.html
Cure Cystinosis International Registry. Cystinosis research has expanded tremendously in recent years. Cystinosis researchers and scientists have made significant research progress and their results are increasingly translated to clinical trials. In light of the ongoing cystinosis research projects around the world and the anticipation of new, clinical trials on the horizon, the Cystinosis Research Foundation recognized the need to create a hub of information for researchers and scientists who ar...Cysti...
cystinosis.patientcrossroads.org
CCIR Partners & Advocates
https://cystinosis.patientcrossroads.org/en/component/content/article/229.html
Cure Cystinosis International Registry. CCIR Partners and Advocates. 24 Hours for Hank. Australian Cystinosis Support Group. CARE, Cystinosis Awareness and Research Effort, Canada. Cystinosis Foundation New Jersey Chapter. Cystinosis Support Group, South Africa. Jenna and Patrick’s Foundation of Hope. Joshua’s Journey of Hope. Tina’s Hope for a Cure. Grupo de Suporte à Cistinose, Brazil.
TOTAL LINKS TO THIS WEBSITE
9
Cystinose Will Change Your Business - Starting tips that Matters
Cystinose Will Change Your Business. Starting tips that Matters. February 20, 2018. February 20, 2018. Small Business Tips – How To Cut Your Costs. October 18, 2017. October 18, 2017. Things Not To Do While Hiring Movers Company For Home. October 18, 2017. October 18, 2017. Cases Handled By Criminal Lawyers In Toronto. September 19, 2017. September 20, 2017. Features To Look For When Searching For Tradesman Insurance. September 18, 2017. September 18, 2017. How Can I Show My Talent To People? July 6, 2017.
cystinose's blog - ma vie a 10ans - Skyrock.com
Ma vie a 10ans. Bonjour à tous je m'appelle florian rodriguez, j'ai dix ans et je suis atteint d'une maladie, qui se nomme la (CYSTINOSE). Ce blog est fait pour touts les parents qui on envie de suivre mon évolution il sera mis à jour régulièrement au fil de l'évolution de ma maladie. Longue vie à vous tout, et bonne visite dans ma vie.florian. Besançon,Doubs,france (25). 19/07/2007 at 6:04 AM. 30/08/2012 at 2:26 AM. Subscribe to my blog! Please enter the sequence of characters in the field below. Don't ...
cystinosis-thestorysofar.blogspot.com
Cystinosis - The Story So Far.
Cystinosis - The Story So Far. The journey so far. There was an error in this gadget. Monday, 4 March 2013. Well sorry I haven't posted in a while. Had no laptop but then remembered can use the app on iPhone lol. Trying to remember everything that's happened lately. Mostly it's been good stuff really. Few colds for both girls but have manage to keep them out of hospital! She's back in 2 weeks to be checked again and see if its improved with a patch. Apart from all that she's doing well! She loves all the...
Care
Cystinosis Foundation - Founded in 1983 - Serving Families for Over 25 Years
The Cystinosis Foundation has been hosting family conferences in the U.S. and Europe since 1983. Read about our 9th International Conference and more in the latest Newsletter by. Would you like to participate in the next Cystinosis Clinic at UCSD/ Rady Children's Hospital in San Diego, Ca? To schedule appointments, patients should call. Delayed-release capsules - oral therapy for vital organs. The treatment of Corneal Crystals in Cystinosis Patients. Join Our Email List. A Guide for Parents, Patients,.
Cystinosis - For a Healthy Life
Tips on how to travel on a budget. June 15, 2017. The world’s giant nation. June 14, 2017. Beauty of the northern hemisphere. June 13, 2017. Spend a cool summer. June 12, 2017. Affordable accommodation for everyone. June 11, 2017. Proven Ways to Reduce Work-Related Stress. March 11, 2018. All the Reasons to Replace your Medication with Spices. March 2, 2018. Tips on how to travel on a budget. If you are up for a vacation to gain some new experience, but thinking of backing out due to budgetary constraint...
Cystinosis Ireland - Research, Awareness & Support
Learn more about Cystinosis. Research. Awareness. Support. Dedicated to supporting families and funding research. One day we’ll find a cure. We provide support and resources to families with cystinosis, from the early stages of diagnosis through to adulthood. Our overhead costs are separately sponsored and therefore all money raised through fundraising goes directly to research. Most research into cystinosis is funded by patient groups like Cystinosis Ireland. How is Cystinosis Diagnosed? Keep up to date.
Cystinosis Research Network (CRN) - The acceleration of the discovery of a cure, development of improved treatments and enhancement of quality of life for those with Cystinosis.
Doctors in Your Area. Making lives better starts here. The Cystinosis Research Network's vision is the acceleration of the discovery of a cure, development of improved treatments and enhancement of quality of life for those with Cystinosis. The Cystinosis Research Network's vision is the discovery of improved treatments and ultimately a cure for cystinosis. The Cystinosis Research Network offers a variety of Family Support services such as an article library, support groups, and family conferences. Dr Do...
Cystinosis Foundation UK | For a brighter future…
For a brighter future. How Can I Help? SUPPORTING INDIVIDUALS, FAMILIES AND RESEARCHERS. IN THE CYSTINOSIS COMMUNITY. RT @rarediseaseday: TODAY is Rare Disease Day! How will you #ShowYourRare today in solidarity with rare disease patients all over the world. Wed Feb 28 15:22:39. Cystinosis is a rare inherited disease occurring in about 1 in 200,000 births within developed countries. It occurs when the mechanism removing excess cystine (an amino acid) breaks down. How Can I Help? October 26, 2017.
cystinosis.patientcrossroads.org
Cure Cystinosis International Registry
Cure Cystinosis International Registry. Learn more about the cause of Cystinosis, genetics and genetic testing, carrier status, and care and management for you or your family member. Learn more about ongoing and upcoming clinical trials, the clinical trial process, and what is involved in participating in a clinical trial. Learn more about the cause of Cystinosis, genetics and genetic testing, carrier status, and care and management for you or your family member. Are you a Professional? As proteins are d...
SOCIAL ENGAGEMENT