Dear Friends,

It is my pleasure to connect with you through the internet as we launch the Cystinosis Foundation eNews. From time to time, we will send you messages about the important work we are accomplishing as we fulfill our mission at home and abroad.

Jean Hobbs-Hotz
President

Dr. Mikhail Kagan, Pediatric Nephrologist

The Cystinosis Foundation supported Dr. Mikhail Kagan, Pediatric Nephrologist at Orenburg Regional Children's Hospital, in his efforts to expand his clinical experience treating cystinosis patients by providing a grant for the purpose of his working with Dr. Elena Levtchenko at the Leuven University Hospital, Leuven, Belgium and Nijmegen, The Netherlands.

Dr. Kagan had clinical practice in the department of pediatric dialysis and pediatric transplantation. He will share his experience with his fellow colleagues.

Dr. Mikhail Kagan (center, back row) and Dr. Elena Levtchenko (far right, back row) share a moment with clinicians at University Hospital, Leuven, Belgium.

Cystinosis Explained to Children

Our executive director, Valerie Hotz, collaborated with Dr. William van't Hoff and Orphan-Europe to publish "Nephropathic Cystinosis Explained to Children". This easy to understand booklet is appropriate for people of all ages, but especially so for young children, who may color the pages.

If you would like a copy mailed to you, please notify Valerie at v.hotz@att.net.

Many parents have requested a copy so they can share with extended family and friends, in order that they may better understand what their loved one is experiencing.

Rare Disease Communities

Eurodis, the Voice of Rare Disease Patients in Europe and the National Organization for Rare Disorders have joined forces to launch the online program, Rare Disease Communities.

We are excited about this program because the web pages are available in five languages, English, French, Italian, German and Spanish and users have the ability to post messages and have their message translated into the other languages, providing our community with an opportunity to remove language barriers. We anticipate additional languages being added soon, including Portuguese. The Cystinosis Foundation has been working with Rob Pleticha at Eurodis to include cystinosis on the web site, which we anticipate launching next month.

Eleven cystinosis support groups are linked to the Rare Disease Communities web site.

Please visit the web site at www.rarediseasecommunities.org

A special thank you to Marjolein Bos for attending the Eurodis workshop this month and contributing to the site.

Raising Awareness of Cystinosis in
South Africa, Portugal and Brazil

Many of you are aware that the Cystinosis Foundation has been working with Gail Daniels and Xenia Mota to establish patient support groups in their respective countries, South Africa and Brazil.

Although these two wonderful women have never met, true to the six degrees of separation rule, they are connected. Gail has recently recruited a teacher living in South Africa, Danielha Castilho, to translate several of our patient brochures into Portuguese, so that the information may be shared by those in Portugal and Brazil.

We are grateful to both Gail and Danielha for their commitment to our community. Gail works diligently to raise awareness about cystinosis. She pitched the story to journalist Morgan Morris who contributed an informative article in the Mail&Guardian Online, February 25, 2011 edition.

Xenia Mota, grandmother of Yago, recently sent us Yago's story. She gave permission to share with you.

Read Yago's Story

Cure Cystinosis International Registry

The Cystinosis Foundation partnered with the Cystinosis Research Foundation and other family foundations to launch the first international registry dedicated solely to cystinosis patients. The registry was created by medical and scientific cystinosis experts with leadership from many international cystinosis organizations.

The purpose of the registry is to connect those with cystinosis to the research community whose goal is to learn more about this rare disease and ultimately develop a cure for cystinosis.

The Cure Cystinosis International Registry has enrolled 239 individuals to date. We encourage you to register today and we hope you will spread the word to others who have cystinosis.

You can register at www.cystinosisregistry.org

If you have any questions, please email the curator, Betty Cabrera at coordinator@cystinosisregistry.org

Cystinosis Foundation Mission

The Cystinosis Foundation was established in 1983 with a mission to educate patients, families and medical professionals about cystinosis, to provide emotional support for those copying with this rare disease and to encourage and support research for improved treatments and a cure.

Since 2000 our mission has been extended internationally to reach and unify cystinosis patients, wherever they live in the world.

Our mission is accomplished through the publication of newsletters, brochures, the creation of patient support groups and the hosting of unique educational conferences that include medical professionals.

Visit us at www.cystinosisfoundation.org