30th April 2013:

Procysbi (delayed release cysteamine bitartrate) has received F.D.A. approval! Full press release here:

http://www.fda.gov/NewsEvents/
Newsroom/PressAnnouncements/
ucm350091.htm#.UX_1e5Cm
4EE.mailto

The Cure Cystinosis International Registry (CCIR) was established in February 2010 to connect those with cystinosis to the research community in an effort to find a cure for cystinosis.

To mark the 2nd anniversary of the Registry a newsletter was produced to share CCIR's successes thus far. By reading this update you will be able to appreciate what an important contribution the cystinosis community are making.

Due to everyone's participation, CCIR is becoming a powerful and invaluable tool to researchers, clinicians, and patients in the cystinosis community.

Newsletter available here

PLEASE take the time to register with the C.C.I.R. if you have not already done so.

Calling All Researchers:

Call for M.R.C.G./H.R.B. Joint Funding scheme 2013 is now CLOSED.

Thank you to those researchers who submitted projects for consideration.

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:

http://vimeo.com/60956258

WELL DONE Eibhlis, Brid and Martina who completed the Limerick Half Marathon, 5th May in aid of cystinosis research.

ANNUAL GOLF CLASSIC - 10TH ANNIVERSARY CELEBRATION
To be held at Grange Golf Club again this year, Friday 31st May. Contact us on mail@cystinosis.ie for more details.

To mark our Tenth Anniversary would you like to be one of our €100 by 100 team? We are looking to recruit 100 people to raise €100 each by 31st December 2013. More details here

To kick off the "€100 by 100" we have been donated a treasure trove for coin collectors...details of how you can bid for these here.

FIRST BID RECEIVED: 5TH MAY 2013: €150 - ANY OFFERS?

fundraising and donations - find out more

May 01, 2013

FIRST BID RECEIVED!
Our €100 by 100 campaign has kicked off with the auction of a coin collection. Find out more

Apr 15, 2013

Tenth Anniversary celebrations
We launch our €100 by 100 Campaign Find out more

Mar 09, 2013

RUNAMUCK....but all in a good cause
They survived it! Rachael, Andy, Dylan and Johnny underwent this torturous ordeal for cystinosis Find out more

Feb 08, 2013

A Night of Culture in aid of Cystinosis!
Stephen Rea's performance of "The Third Policeman" was a sellout event last night at the Pavilion Theatre, Dun Laoghaire Find out more