Cystinosis Research Network

Community Advisory Board (CAB) Meeting
2019-11-01 - 2019-11-03
The Community Advisory Board (CAB) was created to establish a worldwide cystinosis committee under the mentorship of Eurordis, the representative body for rare diseases in Europe.
The key objective of CABs is to engage with pharmaceutical companies in order to bring the patient perspective to clinical trials and other areas.
Members of the CAB receive extensive education and training in all aspects of clinical trials/treatment development so that they become patient experts. The Cystinosis CAB has expanded its remit to engage at all stages of research development, including at the early research stage, and to provide advice and the patient perspective to ensure more effective clinical trials and more efficient and speedy market access.
More information on CABs can be found on the EURORDIS website.

Global Genes: Rare Patient Advocacy Summit
2019-09-18 - 2019-09-20 | Sheraton San Diego Hotel & Marina, 1380 Harbor Island Drive, San Diego, CA, 92101, United States
On behalf of the cystinosis community, CRN advocates will attend this rare disease summit to absorb information on the latest therapies and research and participate in collaborative workshops.
Global Genes has more information on their website and FAQs page. “As the largest gathering of rare disease patients, caregivers, thought leaders and other rare disease stakeholders in the world, the RARE Patient Advocacy Summit is an unparalleled opportunity to forge meaningful connections with other rare advocates and take home actionable strategies and tools to accelerate change.”

Above: Clinton Moore (left) and Katie Morrison (right) at the 2018 Rare Patient Advocacy Summit.

Seed-Balls for Cystinosis
2019-09-09
(Left) Carter'(s last boat ride before G-J tube insertion. (Right) Look who turned 2!
Over the last few years, Carter’s family has taken a strong interest in monarch butterflies. Post diagnosis, Grandmom (Carrie) knew she wanted to create an event to honor his resilient spirit. To celebrate Carter’s second birthday and new found love for butterflies, they’ve partnered with Seed-Balls. This fundraiser sells clay, compost, and wildflower seeds to support pollinators AND proceeds benefit the Cystinosis Research Network.

UPDATE: Seed-Balls orders are now closed. If you are still interestd in supporting Carter and the cystinosis community, you can make a secure donation here.
Thank you for your support!

2019 CRN Family Conference
2019-07-18 - 2019-07-20 | Hilton at Penns Landing, 201 South Christopher Columbus Blvd, Philadelphia, PA, 19106
Ring in the future with us at the 2019 Family Conference. The weekend is filled with research updates from clinicians and international cystinosis organizations, opportunities to meet and renew friendships, participate in studies, and interact with expert health care professionals. Browse the draft agenda here.
The 2019 Family Conference is July 18 – 20, 2019 at the Hilton Philadelphia at Penn’s Landing. The Hilton Philadelphia at Penn’s Landing is the only hotel on Philadelphia’s beautiful waterfront in the historic district. They offer an indoor pool, lobby bar, 24-hour coffee shop and waterfront dining at Keating’s Rope & Anchor, Bar + Kitchen. Walk to Philadelphia attractions including the Liberty Bell, Independence Hall, Museum of the American Revolution and Blue Cross Riverrink Summerfest. For more information on the hotel please visit their website.

Cystinosis Awareness Day 2019
2019-05-07

2nd Annual 57 Miles for Cystinosis
2019-05-04 12:00 - 2019-05-05 12:00 UTC | Sussex Central High School, 26026 Patriots Way, Georgetown, DE, 19947, United States

Pediatric Academic Societies (PAS) Annual Meeting
2019-04-27 - 2019-04-30 | Baltimore Convention Center
The PAS Meeting brings together thousands of pediatricians and other health care providers united by a common mission: improve the health and well-being of children worldwide.
Every one of the top 10 children’s hospitals support the Pediatric Academic Societies (PAS) Meeting as the CRN has for years. We look forward to working with the providers and attendees once again in 2019.
The Patient Congress is focused on incorporating the patient voice across the entire product lifecycle. This international gathering includes researchers, academics, as well as clinical care providers and community practitioners. Presentations cover issues of interest to generalists as well as topics critical to a wide array of specialty and sub-specialty areas.
EVENT INFORMATION

Register via the PAS website
View the PAS Program
If you are interested in becoming involved in cystinosis advocacy and awareness, contact Aimee at adelmann.aimee@gmail.com.

Patient Congress
2019-03-11 - 2019-03-12 | Hilton at Penns Landing, 201 South Christopher Columbus Blvd, Philadelphia, PA, 19106
The PAS Meeting brings together thousands of pediatricians and other health care providers united by a common mission: improve the health and well-being of children worldwide.
The Patient Congress is focused on incorporating the patient voice across the entire product lifecycle. Through three tailored tracks, examine the pieces integral to the patient journey of both small and large patient populations including patient access, adherence, and advocacy. With more than 250+ industry leaders representing life sciences companies, pharmacies, health plans, provider organizations, patient groups, and patient leaders, join the conversation around innovative and collaborative ways we can improve access and health outcomes for patients. Develop your organization’s patient-centric strategy from drug development through commercialization, break down internal silos, and improve patients’ lives across the entire continuum of care.

EVENT INFORMATION

Register here
Learn about the Patient Advocacy track
Take part in raising education and awareness about cystinosis. Contact Aimee to get started adelmann.aimee@gmail.com.

Rare Disease Day
2019-02-28
February 28, 2019
Worldwide
Here’s a fun way to “Share Your Rare” this Rare Disease Day – sign up for a free cystinosis ribbon temporary tattoo.
Spread cystinosis awareness on Rare Disease Day, Cystinosis Awareness Day and all year long!
We’ve transformed the cystinosis awareness ribbon into a temporary tattoo. Now you can “wear your rare” and help start important conversations.
Once your temporary tattoo arrives, start sharing! Post it for the world the see. If you are on social media, tag your ribbon photo with #mycystinosis to educate others about cystinosis and what it means to you (the good, the bad, and sometimes the ugly). Your post could help another family or individual trying to manage daily life with a rare disease.
Did you know? Our awareness ribbon was inspired by a structure standing 12 foot (3.66m) tall. It was thoughtfully created containing 2,000 green lights, one light for each person living with cystinosis. The outline of white lights represent those who have passed but remain part of who we are today. Now, this symbol of strength has been transformed into a temporary tattoo ready to travel the globe spreading awareness, education, support and love for our cystinosis warriors…thanks to you!
I’d like a free cystinosis temporary tattoo!
Please complete the form below. We ship internationally. Recommended for ages 4+. If you have questions or know someone who’d like one, email info@cystinosis.org.
There are more great ways to get involved. Find out more.

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Stand Up to Cystinosis
2019-02-23 10:00 - 16:00 | Florence Strength and Conditioning, 330 Weaver Road, #100, Florence, KY, 41042
Saturday, February 23, 2019 from 10:00 am – 4:00 pm
We created this event to help raise money for cystinosis because this disease is something very near and dear to my heart. I have been living with this disease since I was 4-years-old. One day I was talking to my friend and trainer, JD, the owner of the gym. I mentioned starting a fundraiser making and selling t-shirts, JD mentioned a weight lifting event and here we are. –Bill Brink
If you are unable to attend the event, please consider making a donation in Bill’s honor.

Charleston Cystinosis Meetup
2018-11-03 | Hilton Garden Inn, 300 Wingo Way, Mt. Pleasant, SC, 29464
Coming Soon!

Indianapolis Cystinosis Meetup
2018-10-30 08:00 - 17:00 | The Westin Indianapolis, 241 W. Washington Street, Indianapolis, IN, 46204

American Society of Nephrology
2018-10-25 | San Diego Convention Center, 111 W Harbor Dr., San Diego, CA, 92101

Houston Cystinosis Meetup
2018-09-08 | Embassy Suites By Hilton Houston Energy Corridor, 11730 Katy Freeway, Houston, TX, 77079

Cystinosis European Conference
2018-07-15 - 2018-07-18 | Movenpick Hotel Berlin, Schoneberger Strasse, 310963
