Cystinosis Awareness Day - Family Meetup
2024-05-04 08:30 - 16:30 UTC | Cincinnati Marriott RiverCenter, 10 W Rivercenter Blvd, Covington, Kentucky, 41011, United States
See you in Cincinnati, Ohio!
On May 4th, we are gathering for an in-person meet-up at the Cincinnati Marriott River Center. Join us for a day of connection, education, and celebration commemorating the 7th Annual Cystinosis Awareness Day. Registration is required and is now closed. Please contact Chelsea with questions at chelseam@cystinosis.org.
Draft Agenda

8:30a Registration + breakfast provided
9:00a Welcome
9:30a Family introductions
10:15a Dr Elizabeth Ames, University of Michigan: Genetics in Cystinosis + Q&A
11:15a Group photo
11:30a Our Mental Health, with Chelsea Meschke, LMSW
12:00p Lunch provided
1:00p Updates from CRN President, Jonathan Dicks
1:30p Goose chase activity
2:30p Patient Support session
3:45p Closing remarks + departures

If you would like to stay at the venue overnight, discounted rates are secured through this booking link.
We hope to see you there! A special thank you our sponsors:

Family Planning with Cystinosis
2024-04-28 19:00 - 20:00 UTC | Virtual
The Adult Leadership Advisory Board introduces the topic of Family Planning with Cystinosis to their monthly meetup series.
Are you an adult with cystinosis thinking about having a family? Not sure if you want to adopt or pursue a traditional birth? Join the Zoom conversation to hear from adults with cystinosis who can help answer some of your questions. Special guests include Briana Dundon, Bryan and Alex Stout, and Emily Mello.
Click here to complete the simple event registration. Event will be held virtually on April 28th 6pm CT/ 7pm ET. We hope to see you there!

Rare Disease Day 2024
2024-02-29 | NY
By taking part in Rare Disease Day you help provide a greater understanding and acceptance of cystinosis and living with a rare disease. You may even find speaking out about cystinosis empowering. Either way, we thank you for being a part of our community and considering taking part in this important day. Here are a few examples of how to get involved:

Share your story with the official Rare Disease Day sponosors here
Sign up for Rare Disease Week on Capitol Hill in Washington, DC. Virtual sessions are also available
Talk with a friend, teacher or loved one about living with a rare disease. Resource materials can be found here including presentations for younger children
Get social; post something personal or leverage the Rare Disease Day Toolkit downloads to raise awareness
Join the Rare Action Network, Light Up for Rare or Show Your Stripes Campaigns lead by the National Organization for Rare Disorders (NORD)
Show support – for yourself or a loved one. The CRN provides special programming and assistance year-round. Discover what is available at no cost to you here
Participate in research. Check the Research tab for open studies including an online Quality of Life study currently looking for U.S. volunteers

Health Insurance - Online Q&A
2024-02-22 19:00 - 20:00 UTC | NY
CRN’s Adult Leadership Advisory Board will host a Q&A with Levi Peterson and Samantha Saver of Patients Rising. Tap into their experience navigating health insurance during this live session.
Register to join the Zoom call on February 22 @ 7pm ET using this link.

Halloween Trivia Night
2023-10-29 20:30 - 21:30 UTC | NY
Test your knowledge of everything Halloween.
ALAB members are hosting a free, online trivia night.
October 29th at 8:30pm ET
Jump on the Zoom call for a chance to win a $25 gift card. Open to teens and adults – use this link at the time of the event; no registration necessary.
We hope to see you there!

2023 Family Conference - Nashville
2023-07-13 - 2023-07-15 | Nashville Marriott at Vanderbilt University, 2555 West End Avenue, Nashville, TN, 37203, United States
The CRN Family Conference is back…and in-person for the summer of 2023. Join us July 13 – July 15 in Nashville, Tennessee. The event will take place at the Nashville Marriott at Vanderbilt University.
For agenda, travel scholarships and more details, click here.
We look forward to seeing you there!

Cystinosis Awareness Day
2023-05-07 | NY
On May 7, 2023 the cystinosis community will come together in honor of Cystinosis Awareness Day (CAD). Now in it’s sixth year, CAD is a global effort to raise funds and educate the general population about this disease. This year’s campaign will include testimonials from cystinosis warriors, caregivers/family members and international cystinosis organizations. In addition, we will feature physicians and rare partner organizations who’ve teamed up to amplify our message.
How will you spread the word? Here are some ideas to get you started:

“One Thing” Campaign. Share the one thing you wish everyone knew about cystinosis
Nominate yourself or a fellow cystinosis warrior for the Cystinosis Warrior Impact Program
Share your cystinosis odyssey or pass along information from our website
Volunteer for cystinosis research studies
Start a cystinosis fundraiser. Facebook and Instagram make this easy or contact Jonathan Dicks on how to host an event (jdicks@cystinosis.org)
Visit our general list on How to Help
To donate, click here

If you would like to volunteer to become and event ambassador, please email info@cystinosis.org.

Informational Q&A: Cystinosis QoL Study
2023-03-09 10:00 - 11:00 (America/New_York) | NY
We will host an informational session on the CRN funded study “Development of a patient-reported outcome to measure the health-related quality of life of children and adolescents with cystinosis: QUALIFY-US”
The research team will be available to explain the project and what participation would involve. Attendees will have the opportunity to ask questions.
March 9, 2023
10:00 – 11:00 am Eastern
Join the Zoom meeting using this link
In partnership with the Department of Medical Psychology at Germany’s University Medical Center in Hamburg-Eppendorf, Dr. Julia Quitmann and team are actively recruiting participants for online interviews. The study focuses on health-related quality of life (HrQoL) and aims to learn more about the challenges and management of the disease and the needs of patients living with cystinosis.
Both cystinosis patients and parents may be eligible. Additional information is available here or contact Isabell Suck or Stefanie Witt at quality-of-life@uke.de.

Rare Disease Day 2023
2023-02-28 | NY
February 28, 2023 is Rare Disease Day.
A movement created by Eurordis, Rare Disease Day unites an international community and promotes progress for all those affected. Rare Disease Day raises awareness for the 300 million people living with rare disease around the world and their families and carers; including our 2,000 cystinosis warriors.
Here are some resources and ways to participate in Rare Disease Day 2023:
Virtual Meetings. Join the discussion, “Intersections with Rare Diseases – A patient focused event” February 27, 9:00 am – 4:45 pm ET. Rare Disease Week on Capitol Hill activities through EveryLife Foundation. In the UK: Improving Care Coordination for Rare on March 2, 11:00 am – 13:00 pm GMT.
Share your rare. Take a selfie using Rare Disease International’s virtual photo booth, share your cystinosis story with us at info@cystinosis.org or visit rarediseaseday.org/share-your-story. Need inspiration? Read about Reza’s cystinosis story here.
Use your voice. Provide feedback to the NORD/Rare Disease Diversity Coalition (RDDC) survey to be heard, included, and counted. This national survey of underrepresented rare disease patients will help us better advocate for equal access to care for all people living with rare diseases.
Light Up for Rare by illuminating your home or a monument in your city.
Find an event in your area via the Rare Action Network.
Rare Disease Basics. Learn and share the basics of your rare disease with this intro to cystinosis video and our Cystinosis 101 page.
Rare Equity Guide; How can we achieve equity for people living with a rare disease? Tune in to the Understanding the Emotional Health of Rare Disease Patients session from Global Genes.
Research Participation. This cystinosis study can be completed from home. Have questions? Join this live Q&A event with researchers.
Guides for Rare Adults. Download the Rare Disease Employment Toolkit and Living rare: Family Planning Toolkit.
Rare Programming. Take advantage of the special programming offered by your patient advocacy organization.
Self care. It can be easy for rare patients and caregivers to over look their mental health. If you are in crisis, please reach out.
Make a donation. Donate time by volunteering with the CRN [info@cystinosis.org] or support our mission with a monetary contribution.

Cystinosis Sessions: July Video Call
2022-07-09 16:00 - 17:00 UTC | NY
Founding ALAB member, Brian Ensor shares his first-hand experiences with the AstraZeneca Vaccination Study. Join the Zoom call Saturday, July 9 at 4:00pm ET. Agenda items include the AZ study, open discussion and information on the ALAB’s call for new applicants.
Calls are held quarterly – we hope you are able to join us!
To join, click: https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
New to Zoom? We recommend completing these steps prior to the call.

Secure access to a mobile device (PC, Apple, Android), desktop or laptop computer
Ensure reliable internet connection
Download Zoom Cloud Meetings here or through your device’s app store
Click on the link https://zoom.us/j/2663523786
Have the Meeting ID ready: 266 352 3786. If you use the link provided, the meeting ID is not needed.

Add the meeting to your calendar by clicking one of the buttons below.

CNE International Conference
2022-07-07 - 2022-07-10 | MTC1 Maria-Theresiacollege, Sint-Michielsstraat 6, 3000 Leuven, Belgium
This summer, Cystinosis Network Europe (CNE) will host an International Conference July 7-10 in Leuven, Belgium. The conference will be segmented into a scientific meeting on July 7 with the family conference running July 8-10.
Access details here including:

Conference website
Registration page
Hotel and lodging info
Session details click here
Questions? Email cystinose@ziggo.nl

Call for abstracts!

During the family conference, a poster session for young researchers will be held, which is intended to inform families and those living with cystinosis about their relevant research in the cystinosis field. Its primary aim is to fuel hope in people dealing with cystinosis by demonstrating the usefulness and impact of your research on patients’ everyday life, and drawing the perspectives for a better future. Learn more here.

CNE is an umbrella grouping of patient support, advocacy and research organizations in Europe and beyond.
Post-conference update
The organization of the 3rd CNE International Cystinosis Conference would like to offer all interested parties the opportunity to view the video recordings in 8 languages and watch the presentations.
You can find everything about the conference at https://cystinosis.eu.

2nd Annual SC Golf Fundraiser
2022-06-18 09:00 - 14:00 UTC | Wild Wing Avocet Golf Course, 1000 Wild Wing Boulevard, Conway, South Carolina, 29526
Gail Potts and her South Carolina team are back at it!
After a successful inaugural event last summer, Gail continues to honor her daughter Deanna’s legacy with a golf fundraiser to benefit the Cystinosis Research Network (CRN). Proceeds from the event will support research, family support and education for those impacted by cystinosis.
This year’s golf outing takes place on June 18 at Wild Wing Avocet Golf Course and includes a barbecue lunch. $260 per team or $65 per player with a 9am shotgun start. Get started by registering online today.
If you can’t make it to Myrtle Beach, there are additional ways to support Gail’s cause; you can sponsor a hole or contribute a raffle prize. She also has an Facebook fundraiser you can access here or donate on our web page.
Questions? Contact Elwin Miles at elwin.miles@gmail.com or 843-222-5974.
Check out this highlights reel from the 2021 golf outing on our YouTube channel.
Thank you for visiting!

5th Annual Cystinosis Awareness Day
2022-05-07 | NY
On May 7, 2022 we celebrate the 5th Annual Cystinosis Awareness Day.
This is an opportunity to educate the world about cystinosis, a rare disease that impacts 2,000 patients and their loved ones. Please join us in commemorating this event. Here are a few suggestions on how to participate:

Check out the Cystinosis Warrior Impact Program. A brand new initiative aimed at impacting each and every person living with cystinosis.
Awareness Day Giveaway. As a thank you for growing with the CRN, we are sending plantable awareness ribbons loaded with wildflower seeds. Request yours here.
Advocate. Share a snapshot or your perspective on living cystinosis with the people around you; in person or online with #cystinosisaware.
Research. Volunteer for research studies or make a donation.
For more information or additional ideas, email info@cystinosis.org.

We appreciate your support!

Cystaran Eye Drops Virtual Town Hall
2022-04-27 20:00 - 21:00 UTC | NY
On Wednesday April 27, Leadiant Biosciences and AllianceRx Walgreens Prime invite the cystinosis community to attend a virtual Town Hall. With Cystaran eye drops back in stock, the discussion agenda will cover recent approval and availability and an interactive Q&A session. Open to residents of the U.S.
Questions can be submitted in advance to cgreeley@cystinosis.org or live during the Zoom session. Use this link to tune in on April 27 at 8:00pm ET / 7:00pm CT / 6:00p MT / 5:00pm PT: https://us06web.zoom.us/j/83279423967 Passcode: [REDACTED]

Cystinosis Sessions: April Video Call
2022-04-09 16:00 - 17:00 UTC | NY
Diet and exercise will be the next topics of conversation during the Cystinosis Sessions quarterly Zoom call. Join our Adult Leadership Advisory Board Saturday, April 9 at 4:00pm ET. This event is open for all to attend.
We hope to see you there!
To join, click: https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Here are instructions to help with downloading Zoom. We recommend completing these steps prior to the call.

Secure access to a mobile device (PC, Apple, Android), desktop or laptop computer
Ensure reliable internet connection
Download Zoom Cloud Meetings here or through your device’s app store
Click on the link https://zoom.us/j/2663523786
Have the Meeting ID ready: 266 352 3786. If you use the link provided, the meeting ID is not needed.

Add the meeting to your calendar by clicking one of the buttons below.

Rare Disease Day 2022
2022-02-28 | NY
February 28th marks the 12th annual Rare Disease Day (RDD).
Observed on the rarest day of the year, the global event campaigns for equity for the over 7,000 rare diseases currently identified. Among those rare diseases is cystinosis. Cystinosis is a genetic, lysosomal storage disorder where unusual cystine accumulation occurs in every cell in the body. The cystine buildup causes tissue and organ failure, leading to kidney failure, muscle wasting, swallowing difficulty, diabetes, photophobia, and more. Our cystinosis community is known to have a population of 2,000 worldwide with 600 residing in the U.S.
If you are ready to take action, here are a few ways we can work together make a better world for those living with a rare disease. Thank you for visiting!
– Virtual events:

Rare Disease Day: A Global Priority for Equity (Eurordis) and Demystifying the methodology to determine market value when remunerating the patient community for interactions with the pharmaceutical industry.
Rare Disease Week on Capitol Hill via the EveryLife Foundation.
Rare Disease Day with the NIH (National Institutes of Health).
Rare Disease Day with NORD.
Quinnipiac RDD Symposium featuring CRN President Jonathan Dicks. Register here for the in-person or virtual option to where patients, family members, and researchers will discuss their stories and promote education, awareness, and advocacy. It is also an accredited continuing medical education (CME) activity for physicians.
Rare Disease Day Patient Panel with Wego Health. Join rare disease patient leaders to discuss resiliency, self care, story sharing, and raising awareness to support the rare community.
Rare Disease Day Webinar on Feb 24 with the Canadian Organization for Rare Disorders. Bringing Canada’s Rare Disease Drug Strategy from Vision to Reality.
The Rare Disease Diversity Coalition and Black Women’s Health initiative is Feb 28 at 12pm ET. Discuss issues facing Black, Indigenous and People-of-Color (BIPOC) living with a rare disease https://bit.ly/3HDWVyF.

– The AllStripes cystinosis research program is here and we are proud to be a partner. We are looking for families impacted by cystinosis who want to advance cystinosis research from home. You can learn more here: allstripes.com/cystinosis.
– Share information about rare disease within your networks and social media. For example: Join the Global Genes challenge by posting a photo/video wearing denim with #ShowYourGenes.
– Light Up for Rare through rarediseaseday.org.
– School Toolkit. The kit may help you have discussions with teachers or young children about rare disease.
– Equity Toolkit. Rarediseaseday.org has featured tools to assist people living with a rare disease improve social opportunity, non-discrimination in education and work, and equitable access to health, social care, diagnosis and treatment.
– Donate. You can contribute towards the research, education and support efforts of the CRN by clicking here.
– View the video message from the Adult Leadership Advisory Board; start watching here.

A Benefit for Elle
2022-01-16 13:00 - 18:00 UTC | The Hilltop, 950 Pavillion Street, Cincinnati, OH, 45202, United States
Join The Hilltop and Dicks Family for a fundraiser to benefit sweet Elle. Elle was diagnosed with cystinosis and her family, friends and community have supported her every step of the way. Her father is Jon Dicks, President of the Cystinosis Research Network. You can read about the first few years of her journey as documented here in the Fall 2019 issue of The Cystinosis Advocate Newsletter.
On Sunday, January 16th, a local bar and restaurant will donate tips and a portion of sales to benefit Elle and her fight against cystinosis. If you are not in the Cincinnati area, you can donate to the Cystinosis Research Network here.
Thank you for your support!

Cystinosis Sessions: January Video Call
2022-01-08 16:00 - 17:00 UTC | NY
Saturday, January 8th at 4:00pm ET, join the Adult Leadership Advisory Board (ALAB). Discuss mental toughness and ways to stay positive with others within the cystinosis community.
Please note: this is not just for adults living with cystinosis, everyone interested is invited to attend.
To join, click: https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Here are instructions to help with downloading Zoom. We recommend completing these steps prior to the call.

Secure access to a mobile device (PC, Apple, Android), desktop or laptop computer
Ensure reliable internet connection
Download Zoom Cloud Meetings here or through your device’s app store
Click on the link https://zoom.us/j/2663523786
Have the Meeting ID ready: 266 352 3786. If you use the link provided, the meeting ID is not needed.

Add the meeting to your calendar by clicking one of the buttons below.

Cystinosis Sessions: October Video Call
2021-10-02 16:00 - 17:00 UTC | NY
Saturday, October 2nd at 4:00pm ET, join the Adult Leadership Advisory Board (ALAB) for a Zoom discussion. Chat with others in the cystinosis community about current events, travel and vacation tips, staying safe curing COVID-19, and whatever is on your mind.
Please note: this is not just for adults living with cystinosis, everyone interested is invited to attend.
To join, click: https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Here are instructions to help with downloading Zoom. We recommend completing these steps prior to the call.

Secure access to a mobile device (PC, Apple, Android), desktop or laptop computer
Ensure reliable internet connection
Download Zoom Cloud Meetings here or through your device’s app store
Click on the link https://zoom.us/j/2663523786
Have the Meeting ID ready: 266 352 3786. If you use the link provided, the meeting ID is not needed.

Add the meeting to your calendar by clicking one of the buttons below.

Cystinosis Sessions: September Video Call
2021-09-11 16:00 - 17:00 UTC | NY
Saturday, September 11th at 4:00pm ET, join the Adult Leadership Advisory Board (ALAB) for a Zoom discussion.
TOPICS
The month’s central topic is COVID-19 and vaccines. This is a fluid discussion and will include the latest CDC announcements, mental and physical well-being, side effects encountered after receiving COVID-19 vaccines, the booster shot available for immunocompromised individuals, personal experiences, and more.
ALL are invited to attend. Please note: this is not just for adults living with cystinosis.
To join, click: https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Here are instructions to help with downloading Zoom. We recommend completing these steps prior to the call.

Secure access to a mobile device (PC, Apple, Android), desktop or laptop computer
Ensure reliable internet connection
Download Zoom Cloud Meetings here or through your device’s app store
Click on the link https://zoom.us/j/2663523786
Have the Meeting ID ready: 266 352 3786. If you use the link provided, the meeting ID is not needed.

Add the meeting to your calendar by clicking one of the buttons below.

CRN Golf Tournament: Myrtle Beach
2021-08-14 09:00 - 14:45 UTC | Myrtle Beach National Golf Club, 4900 National Drive, Myrtle Beach, SC, 29779, United States
The Myrtle Beach National Golf Club and Gail Potts are hosting a golf tournament benefitting the Cystinosis Research Network on Saturday, August 14th. Click here to register today or make a donation through this website.

Cystinosis Sessions: August Video Call
2021-08-07 16:00 - 17:00 UTC | NY
The Adult Leadership Advisory Board (ALAB) invites you to join the conversation on August 7th at 4pm ET. The video call with be hosted via Zoom.
TOPICS
ALAB members will lead a discussion about the CRN Virtual Conference (held July 16-18, 2021).
To join, click: https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Here are instructions to help with downloading Zoom. We recommend completing these steps prior to the call.

Secure access to a mobile device (PC, Apple, Android), desktop or laptop computer
Ensure reliable internet connection
Download Zoom Cloud Meetings here or through your device’s app store
Click on the link https://zoom.us/j/2663523786
Have the Meeting ID ready: 266 352 3786. If you use the link provided, the meeting ID is not needed.

Add the meeting to your calendar by clicking one of the buttons below.

2021 CRN Summer Online Conference
2021-07-16 18:00 - 2021-07-18 15:45 UTC | NY
Our biennial conference took place – virtually – July 16 – July 18, 2021.
With the safety and health of our community in mind, we shifted from an in-person event to a 100% online conference series. We are focused on providing an educational, supportive, engaging and fun experience. The beat goes on!
The conference is currently closed. However, select sessions are available now on our YouTube channel and you can review the agenda here.
Our original 2021 conference location of Nashville, Tennessee will now host our face-to-face celebration in 2023. We hope to host more in person regional gatherings in 2022. Please be sure to check back on our website and social outlets for future announcements.

Cystinosis Sessions: July Video Call
2021-07-10 16:00 - 17:00 UTC | NY
The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on July 10th at 4pm ET.
TOPICS
The conversation topics include returning to the workplace after COVID-19 and the CRN Virtual Conference (held July 16-18, 2021).
To join, click: https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Here are instructions to help with downloading Zoom. We recommend completing these steps prior to the call.

Secure access to a mobile device (PC, Apple, Android), desktop or laptop computer
Ensure reliable internet connection
Download Zoom Cloud Meetings here or through your device’s app store
Click on the link https://zoom.us/j/2663523786
Have the Meeting ID ready: 266 352 3786. If you use the link provided, the meeting ID is not needed.

Add the meeting to your calendar by clicking one of the buttons below.

Cystinosis Sessions: June Video Call
2021-06-05 16:00 - 17:00 UTC | NY
The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on June 5th at 4pm ET.
The conversation is open to the entire cystinosis community. This month’s topic is stress. Let’s discuss what we do for relief and ideas that may help in the future.
To join, click: https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Here are instructions to help with downloading Zoom. We recommend completing these steps prior to the call.

Secure access to a mobile device (PC, Apple, Android), desktop or laptop computer
Ensure reliable internet connection
Download Zoom Cloud Meetings here or through your device’s app store
Click on the link https://zoom.us/j/2663523786
Have the Meeting ID ready: 266 352 3786. If you use the link provided, the meeting ID is not needed.

Add the meeting to your calendar by clicking one of the buttons below.

Cystinosis Awareness Day - 2021
2021-05-07 | NY
Welcome to the 4th Annual Cystinosis Awareness Day!
Started in 2018, Cystinosis Awareness Day was created to bring attention to our rare disease. Educating the general public and medical communities about cystinosis has the power to create a better future for the ~2,000 diagnosed and those awaiting a diagnosis.
Since it’s inception, Cystinosis Awareness Day has become a highly anticipated event. Each year we uncover ways to promote understanding within our personal networks and beyond. Cystinosis Awareness Day has also proven to be a successful fundraising initiative.
We’d appreciate your help this May 7th. Please consider participating in one or more of the ways outlined below. We are small but together we are mighty!
Raise Funds
Your donations fuel educational and support programming and cystinosis research. We are currently funding cystinosis studies over a range of areas. This includes male reproduction, cognitive function, measuring the effectiveness of cystine therapy, and more. Visit our Grants Awarded page to learn more.
For the 4th Annual Cystinosis Awareness Day, your hard earned dollars will go 4x as far. We’ve secured donors ready to match your contribution! For example: a $5 donation turns into $20, $57 becomes $228, or $100 translates to $400. Donations will be matched up to $5,700 (that’s $22,800 for our community!) Click here to donate.
Show your love for the Miles for Moose 5.7 mile walk. Moose is a growing little boy with an amazing “nana” who has been putting together this fundraising event in his honor prior to the COVID-19 pandemic. Show your support by registering here.

Raise Awareness
Let’s eliminate those misconceptions about cystinosis. This is the time to break the stigmas and bust down any myths you may have encountered.
MYTH: Cystinosis journeys are all the same.
MYTH: A kidney transplant will cure cystinosis.
MYTH: I am defined by my disease.
If you are ready to help this myth busting mission, start sharing today. This can be as small as a conversation with yourself/a loved one or a bit larger like sharing with your network of social media followers using #cystinosisaware. Follow the Cystinosis Research Network for ideas and ways to have your “myth” featured for Cystinosis Awareness Day. (Links to CRN social channels found in the icons at the bottom of the page)
The Adult Leadership Advisory Board, our umbrella group with a membership made entirely of adults living with cystinosis, has launched a “Succeeding with Cystinosis” campaign for Cystinosis Awareness Day. They’ve challenged the community to search for the successes and failures we’ve experienced within the last year and to share with the group by emailing Sara at shealy194@hotmail.com.
Thank you for continuing to fight for our cystinosis warriors, this May 7th and every day!

Cystinosis Session: May Video Call
2021-05-01 16:00 - 17:00 UTC | NY
The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on May 1st at 4pm ET.
The Cystinosis Session is open to all who would like to engage in and/or listen to conversation around the following topics:

Caregivers. What happens when they pass?
Wills
Employment
and More

Join Zoom Meeting
https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Here are instructions to help with downloading Zoom. We recommend completing these steps prior to the call.

Secure access to a mobile device (PC, Apple, Android), desktop or laptop computer
Ensure reliable internet connection
Download Zoom Cloud Meetings here or through your device’s app store
Click on the link https://zoom.us/j/2663523786
Have the Meeting ID ready: 266 352 3786. If you use the link provided, the meeting ID is not needed.

Add the meeting to your calendar by clicking one of the buttons below.

Miles for Moose 5.7 Mile Virtual Walk/Run
2021-05-01 - 2021-05-31 | NY

CRN at 2021 Virtual PAS
2021-04-30 - 2021-06-04 | NY
The Pediatric Academic Societies (PAS) connects thousands of pediatricians and other health care providers worldwide. This international gathering, delivered virtually in 2021, offers opportunities for a global audience of physician-scientists, clinicians, and educators to share research, explore new ideas, build career opportunities, and collaborate on future projects. Presentations cover issues of interest to generalists as well as topics critical to a wide array of specialty and sub-specialty areas. Learn more here.
Thanks to our cystinosis advocate volunteers, we are able to have a voice at this year’s virtual conference. Please visit our booth at https://www.pas-meeting.org

Cystinosis Sessions: April Video Call
2021-04-10 12:00 - 13:00 UTC | NY
Cystinosis Sessions: April Video Call
All are invited to join as the Adult Leadership Advisory Board hosts a live video call on Saturday, April 10th.
This “Cystinosis Session” will cover but will not be limited to well being, employment and relationships.
Join Zoom Meeting
https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Here are instructions to help with downloading Zoom. We recommend completing these steps prior to the call.

Secure access to a mobile device (PC, Apple, Android), desktop or laptop computer
Ensure reliable internet connection
Download Zoom Cloud Meetings here or through your device’s app store
Click on the link https://zoom.us/j/2663523786
Have the Meeting ID ready: 266 352 3786. If you use the link provided, the meeting ID is not needed.

Add the meeting to your calendar by clicking one of the buttons below.
