Announcements

Sigma Tau Pharmaceuticlas, Inc. is now Leadiant Biosciences, Inc.

On Rare Disease Day, February 28, 2017, Sigma Tau announced it will now be known as Leadiant Biosciences. Leadiant says they will continue the commitment to patient communities. Read the full press release.

2017 Seedcorn Funding Program

The Cystinosis Research Network has collaborated with Cystinosis Ireland and Cystinosis Foundation UK to provide funding for Principle Investigators around the world interested in studying Cystinosis.

Cystinosis Rare Disease Day Campaign

Cystinosis

World Rare Disease Day (WRDD) is February 28, 2017. The global event was created to raise awareness for rare diseases like Cystinosis and highlight the impact on patients’ lives.

Cystinosis Volunteer Opportunity

An Iowa-based non-profit, John Paul II Medical Research Institute (JP2MRI), is looking for Cystinosis patients. Their Rare Disease Program aims to find more treatments and cures for children and patients with rare diseases.

JP2MRI is currently creating a stem cell biobank of patients with rare genetic diseases. They are currently enrolling rare disease patients through a patient registry to ultimately obtain blood or tissue samples. Participation in this research program is entirely voluntary. Your medical information will NOT go to any outside third parties. The patient registry is kept secure and confidential consistent with HIPAA regulations.

JP2MRI is not conducting clinical trials at this time. For more information, visit: www.jp2mri.org

Cystinosis Scholarship Program

Up to $50,000 in scholarships now available!

Global Genes and Horizon Pharma have partnered to bring the Cystinosis community up to $50,000 in continued education scholarships. This includes but is not limited to: college, graduate school, vocational programs, and enrichment courses.

Individuals living with Cystinosis could qualify for up $5,000 per person in funding. The award can be used for current, future AND previously paid tuition.

Scholarships will be awarded on a rolling basis to those with a genuine need for educational assistance.

Learn more at https://globalgenes.org/HNCS/.

Future by Design

A group of adults with Cystinosis formed the 'Future by Design' panel to improve tools and outcomes for future generations. Get a glimpse of their thoughts and aspirations in this video.

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