This page contains recent news articles, when available, and an overview of but does not offer medical advice. You should contact your physician with regard to any health issues or concerns.

Background information on

BREAKFAST FOR THE ARTS  -  Mar 23, 2008
Charlotte Observer,Events Center in Concord will be named after Holt Grier for the night, and $5 of every ticket sale will benefit the Cystinosis Research Foundation.

Raptor Pharmaceuticals unit buys license from UC San Diego  -  Mar 19, 2008
Bizjournals.com,Cysteamine is already approved by the Food and Drug Administration to manage another disease -- nephropathic cystinosis -- which primarily affects the

Raptor Pharmaceuticals Corp. Enters Agreements to Advance Clinical ...  -  Mar 19, 2008
Genetic Engineering News (press release),Cysteamine is currently approved by the FDA for the management of nephropathic cystinosis ("cystinosis"), a genetic lysosomal storage disease characterized

Persevering through the pain  -  Mar 14, 2008
Federal Way Mirror,Gracie and Emma suffer from cystinosis, a rare disease characterized by abnormal accumulation of the amino acid cystine in the organs.

Bennu acquires rights from UCSD to develop cysteamine  -  Mar 20, 2008
Trading Markets (press release),Additional rights to cysteamine in NASH complement our license to DR Cysteamine for cystinosis and neurodegenerative diseases.

Zowi’s happiness  -  Mar 12, 2008
ic Wales,Zowiann, of Lanwern Road, Maesycoed, has Falconi’s cystinosis, a rare genetic condition, present in only 150 people in the UK.

Cheerful Aneesha is a 100 per cent star  -  Mar 14, 2008
Spenborough Guardian,Aneesha Hussain has Franconi Syndrome with cystinosis, and while she has to take regular and sometimes painful medication, wants to live as normal a life as

EXCLUSIVE: DESPERATELY ILL WIFE WHO CONQUERED ALL THE ODDS  -  Mar 9, 2008
Sunday People,With only four days to World Kidney Day, The People tells the inspiring story of Jodi's courageous battle against potentially fatal Cystinosis.

Plea for more kidney donors  -  Mar 12, 2008
Spalding Today,Jodi Smith (31) has cystinosis, a disease affecting around 150 people in the UK. It damaged her major organs and caused her to have kidney dialysis.

Public Consultation On Rare Diseases Yields More Than 600 ...  -  Mar 8, 2008
Medical News Today (press release),Eurordis and founder of CLIMB UK, closed the event with an emotional testimony of her daughter's long-battle against the metabolic disease Cystinosis.

EU focuses attention on rare diseases  -  Mar 4, 2008
EUPolitix.com,The one day hearing heard from Lesley Green, from the UK, whose daughter Jennifer was diagnosed with cystinosis, a rare metabolic disease, in 1980.

Kidney transplant waiting lists lengthen  -  Mar 13, 2008
ic Wales,Zowiann was born with the rare genetic disorder Falconi’s Cystinosis, which meant her kidneys cannot retain the nutrients her body needs.

Finding Hope for Holt  -  Feb 11, 2008
WBTV,Jason Grier invited us into his home Monday afternoon to met his son and to learn more about Cystinosis. The disease receives no federal funding for

Statement of Dr. Paul A. Sieving on the Passing of Dr. Murial ...  -  Jan 25, 2008
PharmaLive.com (press release),She had remarkable success in reducing visual loss associated with the metabolic disorders gyrate atrophy and nephropathic cystinosis.

Raptor Pharmaceuticals Acquires Orphan Clinical Program  -  Dec 17, 2007
CNNMoney.comCysteamine bitartrate is prescribed for the management of the genetic disorder known as nephropathic cystinosis ("cystinosis"), a lysosomal storage disease

Raptor picks up drug program in merger  -  Dec 17, 2007
Bizjournals.com,The drug is a new formulation of an already approved drug to treat nephropathic cystinosis, which can cause kidney failure. EC Cysteamine has orphan drug

Twin sisters receive kidneys from same donor  -  Dec 10, 2007
MSNBCDalomba’s daughters were diagnosed before their first birthday with cystinosis, a rare and incurable genetic condition that blocks normal production of

DANIEL'S DOLPHIN SWIM FUNDS BID  -  Dec 21, 2007
Lincolnshire Echo,Both girls suffer from a rare, life-threatening illness called cystinosis. Their families are striving to raise £9000 so the pair can go to Disney World,

Raptor's clinical division acquires orphan clinical program  -  Dec 19, 2007
Trading Markets (press release),Cysteamine bitartrate is prescribed for the management of the genetic disorder known as nephropathic cystinosis. Christopher Starr, Raptor's CEO,

Twins' kidney transplants are firsts  -  Dec 7, 2007
Chicago Tribune,The girls have suffered from cystinosis, a rare and life-threatening disease that can cause kidney failure, and started showing symptoms when they were 7

Identical Twins Suffering from Rare Condition Have Simultaneous ...  -  Dec 7, 2007
FOX NewsSince birth, Anji and Nelly Polanco have suffered from cystinosis — a rare genetic disease that primarily affects children, according to a report in The

Twins Receive Kidneys in Record-Breaking Transplant  -  Dec 10, 2007
eFluxMediaIdentical twins Nellie and Anji Palanco were suffering from a rare disease called cystinosis which had destroyed their kidneys. Dialysis kept them alive

Young Twins Get Tandem Kidney Transplants  -  Dec 7, 2007
CBS2 Chicago,Both girls have cystinosis. The condition ruins a person's kidneys within the first 10 years of her life, so the girls needed transplants.

Twins Recovering After Record-Breaking Transplant  -  Dec 7, 2007
NBC5.com,A rare disease called cystinosis had destroyed their kidneys, so dialysis kept them alive until the moment their mom got the call.

Kidney donor is identical for twins  -  Dec 8, 2007
Chicago Tribune,The girls started showing symptoms of cystinosis, a rare and life-threatening disease that can cause kidney failure, when they were 7 months old.

Twins on road to recovery after kidney transplants  -  Dec 8, 2007
Chicago Sun-Times,Around their first birthday, the girls were diagnosed with cystinosis, a rare disease in which an amino acid, cystine, accumulates in the organs.

Family's twin blessing  -  Dec 7, 2007
Chicago Sun-Times,Since birth, Anji and Nelly have suffered from cystinosis, a rare disease that blocks the body's normal production of amino acids; it's led to a host of

teacher donates kidney to former student  -  Nov 8, 2007
St. Louis Post-Dispatch,..."this scientist-looking doctor walked by the (hospital) room and said, 'hey, she looks like she's got cystinosis, and then walked off," schroeter said.

140000 irish people have rare diseases  -  Nov 9, 2007
Irish Health,...executive of the irish cancer society and chairman of the mrcg said it is astonishing that as well as conditions such as cystic firbosis and cystinosis,

Scientists land cash boost for Cystinosis  -  19 Oct 2007
Checkbiotech.org (press release),The money will allow School of Pharmacy scientists to carry out further research into Cystinosis - a rare genetic disease which can cause kidney failure if

Wet Seal’s Thomas Has Tough Task of Growing Retailer  -  Oct 13, 2007
Orange County Business Journal,Fletcher Jones’ general manager Garth Blumenthal presented a $5000 donation to Lula to go toward Halfacre’s favorite charity, the Cystinosis Research

Raiders grant area boy’s wish  -  Sep 26, 2007
Silverton Appeal Tribune,Swartout is used to his stays at the children’s hospital, having been diagnosed with Cystinosis when he was younger. Cystinosis is a recessive disease that

Patient choked to death on toast  -  Oct 9, 2007
ic Birmingham.co.uk,Mr Jennings had kidney failure and was blind due to rare disease cystinosis, when an amino-acid damages organs, and which affects only 2000 people worldwide

Italy's Recordati buys Orphan Europe for 135 million euros  -  Oct 2, 2007
Pharma Times (subscription),It currently markets ten products, including Cystagon (cysteamine) for the treatment of nephropathic cystinosis and Wilzin (zinc acetate) for Wilson's

• Jones Cup to honor Halfacre  -  Sep 5, 2007
Daily Pilot,Tournament donations made in the local philanthropists’ name will go to research on treating and curing cystinosis. By Brianna Bailey The Jones Cup golf

Transplant girl's family back call  -  Aug 20, 2007
Sunderland Echo,At just 18 months old, Sarah was diagnosed with cystinosis, a rare genetic disease which affects just one in 250000 people. But since her transplant,

Sioux City Woman Affected By Rare Genetic Disorder  -  Aug 16, 2007
KTIV,Cystinosis. It's a rare genetic disorder that causes the amino acid cystine to build up in your body. That build up can cause a lot of damage to your

Boy overcomes transplant surgery to compete in city swim meet  -  Aug 2, 2007
Checkbiotech.org (press release),The boys suffers from cystinosis, a rare genetic disorder. "We knew it was going to happen at some point in time," said Tim Binger.

Thanks Rowling for making the world magical  -  Jul 20, 2007
Economic Times,...problems we all face, as well as the particular problem of a younger sister who was dying, slowly and without hope of a disease called cystinosis.

Woman to get second kidney  -  Jul 28, 2007
Tribune Chronicle,Melea was born with cystinosis. The rare disease causes impaired kidney function. Cole-Monley was tested again beginning in May. Like her former husband,

Helping Others: Upcoming events  -  Jul 26, 2007
Sacramento Bee,...silent auction funds raised will be Jenna & Patrick's Foundation of Hope, a nonprofit dedicated to supporting research to find a cure for cystinosis.

• Children's book club 'pays it forward' by donating books  -  Jun 14, 2007
Daily Pilot,Halfacre never forgot where he came from and brought that charm and warmth with him, said Nancy Stack, the founder of the Cystinosis Research Foundation.

• AROUND TOWN: Jones Cup will donate to Halfacre's favorite charity  -  Jun 23, 2007
Daily Pilot,The dealership has committed to a minimum $5000 donation to the Cystinosis Research Foundation, which was founded by Jeff and Nancy Stack of Corona del Mar

New Sheriff in Town: Carona Isn’t Running; Surf City Cup Sighting  -  Jun 15, 2007
Orange County Business Journal,Yet another eye-popping fund-raising result: The Cystinosis Research Foundation reports its Natalie’s Wish event at the Balboa Bay Club raised $2.1 million

ASNR: Most Brain Aneurysms in Children Arise Spontaneously  -  Jun 14, 2007
MedPage Today,...end stage renal disease with hypertension and cystinosis, growth hormone deficiency, cutis marmorata telangiectasia congenital, and congenital absence

His nurse. His caretaker. His mother.  -  May 11, 2007
Lynchburg News and Advance,Brian has a rare genetic disease called nephropathic cystinosis. The disease causes crystals to form in different organs, especially in the eyes and kidneys

Ruby's kidney op highlights vital role of donors  -  May 10, 2007
Leeds Today,Ruby's kidney failure was caused by the inherited condition cystinosis – the odds of being born with which were more than 14 million to one.

Transplant girl's three kidneys  -  May 11, 2007
The Sun,Ruby Watkins, nine, was given a new kidney from an adult donor as she battled organ failure disease cystinosis. Her own kidneys had stopped working,

Young stars are real show stoppers  -  Apr 10, 2007
Buchan Observer,Mintlaw youngster Lena Forsyth, who suffers from the potentially life-threatening metabolic condition, Cystinosis, is a pupil at the dance school.

Inspiration for charity loses fight for life  -  Apr 4, 2007
ic CheshireOnline,Jenny, 28, who was born with the rare metabolic condition cystinosis, passed away in the early hours of Wednesday morning after losing a battle with cancer.

Charity mourns its inspiration  -  Apr 7, 2007
Crewe Guardian,Jenny, who worked as a teaching assistant at Highfields Primary School in Nantwich, suffered from the metabolic condition cystinosis, which attacks the

Hoping to clean up for charity  -  Apr 5, 2007
Buchan Observer,Vicky Forsyth, whose six-year-old daughter Lena suffers from the potentially life-threatening metabolic disorder cystinosis, is selling charity tea towels

Fund set up to help DCCC student suffering from cystinosis  -  Feb 8, 2007
Dodge City Daily Globe,Baird suffers from the genetic disease cystinosis, which attacks the bodyÕs kidney, and eye functions, as well as other vital organs.

Woman fought long battle with rare disease  -  Feb 17, 2007
Dodge City Daily Globe,Lyndsie spent her life battling cystinosis, a genetic metabolic disease that causes the amino acid cystine to accumulate in each cell of the body,

Funds could aid family who lost loved one to rare genetic disease  -  Feb 12, 2007
Hutchinson News,30 after suffering complications apparently caused by cystinosis, a rare genetic disease that attacks the kidneys, eyes and other vital organs.

These kids' stories moved us to tears  -  Nov 16, 2006
Sunderland Echo,...disorder. Sarah was just 18 months old when she was diagnosed with cystinosis, a condition which causes all her organs to crystallize. ...

Search the web for more resources on

Web health.mongabay.com

Disclaimer:

Contact a physician with regard to health concerns. Email requests for further health information will be discarded.

The materials contained on this Web site are for informational purposes only and do not constitute health or medical advice. Use of information on this site does not create or constitute any kind of agreement or contract between you and the owners or users of this site, the owners of the servers upon which it is housed, or anyone else who is in any way connected with this site.

Many links on health.mongabay.com lead to other sites. health.mongabay.com does not sponsor, endorse or otherwise approve of the materials appearing in such sites. Nor is health.mongabay.com responsible for dead or misdirected links.