Announcements

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 http://www.congressweb.com/KAKI/48 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: http://www.pemphigus.org/2016rdd

Milwaukee Bucks (vs. Houston Rockets) , February 29, tip-off 7:00 p.m., BMO Harris Bradley Center (Milwaukee, WI)
Tickets available for purchase: www.bucks.com/buckspass (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..

Contact:
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.

Watch the 2015 Family Conference/Dream, Achieve, Inspire Art Exhibit Video

Cystinosis Research Network releases a new video from the 2015 Family Conference. Click here to watch!



FOR IMMEDIATE RELEASE
Contact: Christy Greeley
Executive Director
Phone: 847-204-6004
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Website: www.cystinosis.org

Art Exhibit Created in Memory of Man with Rare Disease Art Traveling World to Raise Awareness

Lake Forest, IL – October 5, 2015 – The Cystinosis Research Network (CRN), a 501(c)(3) charitable organization, is using broad strokes to raise awareness for cystinosis, a rare, genetic-metabolic disease. Katie Larimore, mom to a 10-year-old daughter with cystinosis, was motivated by Billy Croce, an artist and young man with cystinosis. She says, “[Billy] convinced me… if I could dream of a healthy, full life for my daughter, I could achieve it. And perhaps, I was meant to inspire other people.” Billy passed away earlier this year. In memory of his life and those continuing to fight the disease, an art collection was born.

billy croce
The "Dream, Achieve, Inspire" art exhibit was created in memory of Billy Croce (above) and individuals living with cystinosis across the world.

The exhibit titled: “Dream, Achieve, Inspire,” showcases art from 107 artists living with cystinosis from 30 countries. The collection was unveiled at the Chicago CRN Family Conference in July to the largest attendance in conference history. To keep the momentum going and elevate global awareness, the exhibit will be hosted by cystinosis advocacy groups in Brazil, Europe, and Mexico throughout the next year.

This video provides a glimpse of the artwork and commentary from some of the artists: click here to view video.

The CRN encourages sharing the link with hashtag #CystinosisAware

Cystinosis is a rare, genetic, metabolic disease impacting approximately 2,000 people worldwide. Cystinosis causes an amino acid, cystine, to accumulate in the kidneys, eyes, liver, muscles, pancreas, brain, and white blood cells. Without treatment, children with cystinosis can develop end stage kidney failure at approximately age nine. This disease has devastating outcomes when untreated. The CRN is comprised of family, friends, and medical researchers dedicated to finding a cure, developing treatments, and enhancing the quality of life for those affected by cystinosis.

Media

For more information, contact Christy Greeley at This email address is being protected from spambots. You need JavaScript enabled to view it. or 847-204-6004 or Katie Larimore at This email address is being protected from spambots. You need JavaScript enabled to view it. or 803-873-2139. Follow up interviews available. You can find the CRN at www.cystinosis.org, on Facebook at www.facebook.com/CystinosisResearch, Twitter @CystinosisCRN, and Instagram @CystinosisResearchNetwork.

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