CRN Announces 2016 Scholarship Application Deadline

It is that time of the year again. From now until the deadline date of Aug. 15, 2016, CRN will be accepting applications for our two, annual $1,000 Scholarships. The first is an Academic Scholarship for an individual with Cystinosis, and the second is the Sierra Woodward Sibling Scholarship for the sibling of an individual with cystinosis. Both scholarships are offered to qualified individuals who have been accepted at, or are attending an accredited college, university, or vocational school. Application information and needed forms can be accessed on CRN’s website at: Completed materials should be mailed to:

CRN Scholarship Committee

C/O Terri Schleuder

40472 Franklin Mill St.

Novi, MI 48375

Materials need to be received by August 15, 2016 to be considered.

Advocates in Washington, D.C.

Over two hundred advocates (including some of our CRN families) were in Washington, D.C. as part of Rare Disease Week on Capitol Hill. You may have heard of a piece of legislation called the OPEN ACT (Orphan Product Extensions Now, Accelerating Cures & Treatments) that could double the number of treatments available to rare disease patients. This bipartisan bill could bring hundreds of safe, effective, and affordable medicines to rare disease patients within the next several years by incentivizing drug makers to repurpose therapies for the treatment of rare diseases.

We need your help to make this bill a law. Contact your legislators and ask them to co-sponsor the OPEN ACT.

NORD and NBA Partner for Rare Disease Day

The NBA and NORD are teaming up to celebrate Rare Disease Day 2016! This means you have an opportunity to attend the NBA games with free or discounted tickets. Plus, there are openings for rare kids to take center court with the NBA players during the National Anthem. You might remember from last year that the Utah Jazz became the first NBA team to show this type of support for Rare Disease Day. We are excited to build on that momentum to help raise awareness and also provide you and your families a chance to relax, celebrate, and make memories together.

Details are below and on the websites provided. Please note, all tickets are available on a first-come, first-serve basis and on-court appearances are not guaranteed.

Sacramento Kings (vs. Oklahoma City Thunder), February 29, tip-off 10:00 p.m., Sleep Train Arena (Sacramento, CA)
Tickets available for purchase:

Milwaukee Bucks (vs. Houston Rockets) , February 29, tip-off 7:00 p.m., BMO Harris Bradley Center (Milwaukee, WI)
Tickets available for purchase: (Enter promo code NORD in “Access an Offer” box)

Celebrating Rare Disease Day As One Community

“Dare to Be Rare®”

The HPS Network and the Cystinosis Research Network have partnered to create an enterprise focused on providing patient advocacy organizations an opportunity to increase fundraising capabilities.

The “Dare to Be Rare®” consortium will be synonymous with philanthropy. While putting our own individual logos aside, we can utilize economy of scale to our best advantage. This “cause marketing” and our collective efforts will link our diverse causes with a shared motivational phrase to create demand and generate funds that will ultimately help all of our diseases. It will create a combined ground swell of support similar to pink ribbons!

“Dare to Be Rare®” will merchandise products to patient advocacy organizations at wholesale price points with the resulting profits from resale to be realized by your organization.

We are in the process of finalizing the framework of this venture. If you are interested in learning more about this opportunity to fundraise together, Email: This email address is being protected from spambots. You need JavaScript enabled to view it..

Donna Appell RN (Hermansky-Pudlak Syndrome Network)
Jose Morales (Cystinosis Research Network)

Next UCSD Cystinosis Clinic to be held February 1

The next multidisciplinary clinic for cystinosis patients (all ages accepted) will be held at UCSD Rady Children's Hospital outpatient clinic on Monday, February 1, 2016, in Suite 200 at 7910 Frost Street. To schedule appointments, patients should call Crystal at 619-543-7800. The physicians and specialists at the University of California San Diego have started a multi-specialty Cystinosis Clinic, including, among other specialists, Dr. Bruce Barshop and Dr. AnnetteFeigenbaum (Biochemical Genetics), Dr. Nadine Benador (Nephrology), Dr. Ranjan Dohil (Gastroenterology), Dr. Doris Trauner (Neurology), Dr. Ron Newfield (Endocrinology), Dr. David Granet (Ophthalmology), and Dr. Stephanie Cherqui (Laboratory Scientist). The clinics will be held on Monday mornings (every 3 months at present), at the UCSD/Rady Children’s Hospital Medical/Research Offices at 7910 Frost Street, San Diego. If you are interested, please contact Denise Young, RN, at 858-576-1700 X4642, or send email to This email address is being protected from spambots. You need JavaScript enabled to view it. or to This email address is being protected from spambots. You need JavaScript enabled to view it.. We will require information ahead of time, for insurance authorization to be arranged and for arrangements for medical records to be released and forwarded.

2015 Fall/Winter Newsletter Released

The CRN 2015 Fall/Winter edition of the newsletter, The Cystinosis Advocate, is available now. Please go to the News/Newsletter link to view it.


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