Media Publications & Articles of Interest
Better Together Competition:
Thanks everyone for all your votes. We made the top 5 in our category!
At the end of 2014 Kidney Disease: Improving Global Outcomes (KDIGO) convened a Controversies Conference on cystinosis. 49 experts from around the world met and the June issue of "Kidney International" has published their conclusions.
Click Here For KDIGO Report
19th November 2015:
Thank you to our friends in TV3 for organising a great fundraising night. Donna Kavanagh went along on the night and spoke to the Evening Herald
1st November 2015:
Donna Kavanagh talks to Newstalk about her son Hagan's diagnosis:
Introducing....Dr. Jennifer Hollywood, one of our current researchers
15th July 2015:
17th August 2015:
Raptor receives FDA approval for use of Procysbi in 2-6 year olds. You can read more here
4th August 2015:
Anne Marie O'Dowd spoke to the Irish Times about her son Luke's life with Cystinosis
23rd July 2015:
Watch Donna Kavanagh and Dr. Atif Awan talk to Mark Cagney and Sinead Desmond about her son Hagan's diagnosis with Cystinosis earlier this year. They appeared on TV3's "Ireland AM" show today.
Donna also gave a very moving interview to Spin 1038 please listen
4th June 2015:
Minister for Health, Leo Varadkar launched the National Rare Disease Office in the Mater Hospital today. Speaking at the launch the Minister said:
“This is a significant day for the management of rare diseases in Ireland.
"A very large number of diseases are classed as rare, somewhere between 5,000 and 8,000, but they affect millions of people across Europe.
"We know that people living with a rare disease and their families, especially parents of young children, are often the leading experts in their diseases. It’s important that we recognise this and provide the necessary supports.
“I see this new office becoming a focal point for rare diseases, building up information and expertise on treatment and services, nationally and internationally.”
10th February 2015:
Dr. Sergio Catz and Dr. Napolitano Gennaro, two researchers at The Scripps Research Institute, whose work has been funded by the Cystinosis Research Foundation in California, have just published some exciting new findings. They
have identified a new cellular pathway that is affected in cystinosis and it is felt that these findings could
eventually lead to new drug treatments for reducing or preventing the onset of renal failure in patients.
22nd December 2014:
Very interesting article which aired on Sky News today and featured cystinosis. It is about an initiative known as the 100,000 Genomes Project, which will help scientists and doctors understand more about specific conditions, including cystinosis.
The Better Together Video Competition provides an opportunity for Irish non-profit organisations like us to show the people of Ireland the part they are playing in making us all better together.
Voting is now closed and unfortunately we weren't successful this time, thanks for all your votes though! Please take a look at the video anyway! Thanks to Dylan and Rachael for putting this brilliant short film together.
22nd March 2013:
Cystinosis Ireland was delighted to be invited to the turning of the sod of "Liam's Lodge", Blennerville, Co. Kerry. This was the launch of the site of what will be Ireland's first national Respite Centre for rare and genetic disorders. Take a look at their site and see what this wonderful facility will look like: www.LiamsLodge.com
If you can offer building materials, equipment or expertise they would love to hear from you at info@LiamsLodge.com
A booklet was produced to mark International Rare Diseases Day 2013, "An Easy Guide to Rare Diseases in Ireland". You can take a look at it here.
Videos of all of the talks given at the Rare Disorders Without Borders meeting held to mark International Rare Diseases Day, 28th February 2013, are now available.
Eibhlin Mulroe chaired a question and answer session, take a look:
- The Department of Justice and Equality are currently holding a consultation on the Implementation of the Charities Act.
The consultation is online and covers three areas:
Charities Regulatory Authority
Register of Charities
Financial and Activity Reporting by Registered Charities to the Charities Regulatory Authority
For each of these areas the online document gives a brief summary of the approach being considered by the Department and then invites answers to a number of specific questions.
Before the end of the consultation period, the Department of Justice and Equality plans to host a stakeholder meeting on the proposals. This will be an opportunity to hear about the proposals contained in the consultation document and to raise questions and give views as part of the consultation. The consultation will remain open until 5.00pm, Wednesday 20th March 2013.
Press Release here issued by the Department of Justice and Equality, together with a link to the online consultation page
- Press Release regarding the Implementation of the Charities Act, issued by the Department of Justice & Equality, February 2013.
- 21st December 2012
Raptor Pharmaceuticals announce that the FDA have stated they will need more time to complete their review process for RP103 and have asked for a three month extension
- 4th October 2012
Sigma Tau receives F.D.A. approval for Cystaran (cysteamine ophthalmic solution) 0.44% for treatment of corneal cystine crystals in cystinosis patients.
- 30th July 2012: Raptor Pharmaceutical announces the issuance of key European patent protecting the cysteamine portfolio.
Full press release here
- 3rd May 2012: Raptor Pharmaceuticals announces the publication of Phase 3 trial results in the Clinical Journal of the American Society of Nephrology
- To mark Rare Diseases Day 2012 the Genetic & Rare Disorders Organisation released the following to the press:
GRDO PRESS RELEASE 28 FEB 2012.pdf
- We currently fund research at University College Dublin. A copy of the UCD School of Biomolecular and Biomedical Science December 2011 Newsletter can be accessed here. The Cystinosis Research Symposium in UCD is featured on page 3
December 2011: 2nd edition of Rare Diseases News now available here
An MRCP/IPPOSI Seminar was held in 2011 regarding Patient Registries. The report has been published. You can read it here
A paper has recently been published in the Journal of Pediatrics regarding cysteamine toxicity in patients with cystinosis.
We urge everyone to read this and be aware of some of the possible very serious side effects of Cystagon.
H.R.B. Press Release prior to our Research Symposium on 13th Oct. 2011
More details on our Research Symposium on on "Research" Page.
An exciting new Cystinosis research project, using the very latest techniques, has been granted funding by C.R.N. The group who will undertake this new work are based at Sunderland University and led by Professor Roz Anderson. Prof. Anderson has been working on a separate cystinosis project for the past number of years and which is funded by the Cystinosis Foundation U.K.
BBC North East News
Raptor Pharmaceutical to Enrol five additional Patients in pivotal Phase 3 Clinical Trial of DR Cysteamine for the Potential Treatment of Nephropathic Cystinosis. 15th February 2011
Ziad Omran worked on Cystinosis research with Professor Don Cairns in R.G.U. This work has just been published in Bioorganic & Medicinal Chemistry Letters. January 2011
PEGylated Derivatives paper
Below is a link to an abstract of Minnie Sarwal and Poonam Sansanwal's work: "Insights into novel cellular injury mechanisms by gene expression profiling in nephropathic cystinosis" which was recently published in Pub.Med: Dec. 2010
Dr. Patrick Harrison spoke at one of our Golf Day Dinners and using the golf analogy described the work he is undertaking on our behalf. It makes an interesting read:
P Harrison Golf.pdf
Another support group, "Natalie's Wish" (Cystinosis Research Foundation) recently launched their latest video, please take a look:
Gene Therapy Researchers form Consortium to bring Cystinosis findings to clinical trials; disease reversed in laboratory tests. Read More
Robert Gordon University, home to our Pro-drug project has recently jumped 27 places in the National Research Quality League Table
This article appeared in the Irish Times on 17th March 2009. Treating her son like a normal eight-year-old boy despite his rare genetic disease is part of her job as a parent, says Anne Marie O’Dowd. "We're in this for life"is her story as told to FIONA TYRRELL, of the Irish Times
- An article discussing our project at University College Cork appeared on 26th June 2008 in The Irish Times
- Sinéad & Ciara Maguire - "2 in a Million", Daily Star (PDF)
- Two US scientists and their UK collaborator were awarded the Nobel Prize for medicine in 2007 for their groundbreaking work in gene technology. Their work plays a big part in our research project in Stanford University - Nobel Prize Article (PDF)
- Kenny Murdock is our "Cystinosis Duck" - Can you spot him in this article (PDF)
- Luke Hennelly "Calling for our Help" - Daily Star 14th June 2003 (PDF)
- "Help us save Luke's life" - Sunday World 17th August 2003 (PDF)
- Darren Barnes is featured in "No treatment for a rare disease" - The Star 8th November 2003 (PDF)
Look back at our activities through these Newsletters from recent years:
Stephen Rea and Cystinosis Foundation launch Women's Mini Marathon 2008 campaign - Read More