SOURCE: Cystinosis Research Foundation

Cystinosis Research Foundation

February 25, 2010 18:35 ET

Cystinosis Research Foundation Redesigns Its Website, Introduces 'CRF Forums' for Families of Cystinosis Patients

IRVINE, CA--(Marketwire - February 25, 2010) -  The Cystinosis Research Foundation, the world's leading provider of funds for cystinosis research, has redesigned its website and created the "CRF Community Forums," a section that enables patients and their families and friends to exchange ideas relating to care-giving and meeting other challenges connected to the rare and fatal metabolic disease.

Streamlined for easier reading and navigation, the site also headlines the latest CRF news about recently published scientific studies and continuing updates on grants for research aimed at finding a cure for the disease that afflicts an estimated 500 people, mostly children, in the United States and 2,000 worldwide.

"Families of children with cystinosis face daily obstacles that are unique to this debilitating genetic disease. This is a forum where they can discuss their concerns with other cystinosis families. They have the opportunity to ask or answer questions and offer advice. This is designed so families can help families. No one should feel alone," said Nancy Stack, co-founder and trustee of CRF.

One of the special forums, for example, focuses on products that make daily living with cystinosis easier.

Cystinosis is a metabolic disease that slowly destroys every organ in the body, including the liver, kidneys, eyes, muscles, thyroid and brain. In patients with cystinosis, the amino acid cystine accumulates in the tissue due to the inability of the body to transport cystine out of the cell. This causes development of crystals, resulting in early cell death. There is a drug, Cysteamine, that can prolong the patient's life, but there is no cure. Almost all sufferers succumb before 40 years old.

Stack said the threads in the CRF Community Forums also cover kidney dialysis and transplants, medication, eye drops, G-Tubes and growth hormones, gastrointestinal issues, social and educational challenges for patients, the stress of patient care, products and services to improve quality of life.

"This is all about helping cystinosis families meet each other online. They may find other families in their geographical area, which may lead to a more personal connection and mutual support," Stack said.

"We're thrilled with our new website. In addition to Community Forums, it contains information on fundraising activities by the CRF, its families and partners. It also carries some professionally produced, heart-rending videos that attempt to convey what living with cystinosis means and the optimism that a cure is within reach," Stack said.

Since its formation in 2003, the CRF has funded more than $10.8 million in cystinosis research. Twice a year the CRF puts out a worldwide call to the scientific community for research proposals. Currently, the CRF is funding 41 studies and 10 research fellows in North America and Europe.

For more information, call the Cystinosis Research Foundation at 949-223-7610 or visit www.cystinosisresearch.org.

Contact Information

  • Contact:
    Zoe Solsby
    CRF
    (949) 223-7610

    Art Barrett
    (714) 602-6021