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The CYSTINOSIS Foundation
Rare Disease Communities Online Global Program
Cure Cystinosis International Registry

 

 

 



 

 

 
    
 

Dear Friends,

We are very pleased to announce the launch of an excellent online resource for the international cystinosis community, Rare Disease Communities online global program. Our executive director, Valerie Hotz, has been working with Eurordis and NORD, two nonprofit rare disease patient advocacy organizations, and coordinating with cystinosis patient support groups, to create the cystinosis section.

We encourage you to become member of this forum by visiting www.rarediseasecommunities.org and registering.

You will see the site is available in five languages and offers opportunity to communicate across the language barrier with human translation. With Rare Disease Communities, users may create an anonymous username when registering with the site and maintain privacy about health matters, which is important. Only your doctor can advise on your personal health matters. We believe this is a reliable source of information for our existing community and will help newly diagnosed families get connected to their local support group more quickly.

We encourage you to share your story of living with cystinosis on the Rare Disease Communities web site. Others will benefit from hearing about your experience in your country. Unlike Facebook, the Rare Disease Communities is patient driven and information is reliable. Cystinosis patient support groups across the world have been involved in creating this site. Members may create an anonymous username when registering with Rare Disease Communities.

It is our pleasure to welcome you to this forum, where you can engage with friends across the miles and have your information remain secure. Many thanks to Eurordis and the National Organization for Rare Disorders for partnering to bring this program to the World Wide Web.

All the best,
Jean Hobbs-Hotz
President


Cure Cystinosis International Registry

We encourage you to register with the Cure Cystinosis Internationa Registry (CCIR) today. The CCIR is a collaborative effort by the Cystinosis Research Foundation, the Cystinosis Foundation and scientists in the global cystinosis community to establish a comprehensive international patient registry for this rare disease. CCIR Board of Advisors include Jerry Schneider, MD, U.C. San Diego, Patrick Niaudet, MD, Hospital Necker-Enfants Malades, Doris A. Trauner, U.C. San Diego and other leading scientists in the field of cystinosis research.

The CCIR is designed to facilitate the development of new clinical trials and research studies for cystinosis by connecting the patient and research communities. Registered providers receive notification of clinical trials, including recruitment, updates and result outcomes. Medical and research professionals who register on the professional/researcher portal can request de-identified data about numerous clinical characteristics from the patient registry database.
That information could prove vital to advances in the care and treatment for cystinosis patients. Participation by patients and scientists is crucial to this goal.

Please visit the web site to register today at www.cystinosisregistry.org

Questions about this registry may be directed to the CCIR curator, Betty Cabrera, MPH, at coordinator@cystinosisregistry.org

 

 CystinosisFoundation.org

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