Cystinosis Research Network

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

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

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

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

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

Stand Up to Cystinosis
2019-02-23 10:00 - 16:00 UTC | 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.

Rare Disease Day
2019-02-28 | NC
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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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.

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.

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

Cystinosis Awareness Day 2019
2019-05-07 | NC

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.

Seed-Balls for Cystinosis
2019-09-09 | NC
(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!

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.

Community Advisory Board (CAB) Meeting
2019-11-01 - 2019-11-03 | NC
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.

American Society of Nephrology – Kidney Week
2019-11-05 - 2019-11-10 | Walter E. Washington Convention Center, Washington, DC, USA, 801 Mt Vernon Pl NW, Washington, 20001, United States
CRN will join the American Society for Nephrology (ASN) and more than 13,000 other kidney professionals from across the globe at Kidney Week 2019 in Washington, DC. The world’s premier nephrology meeting, Kidney Week provides participants exciting and challenging opportunities to exchange knowledge, learn the latest scientific and medical advances, and listen to engaging and provocative discussions with leading experts in the field.

Giving Tuesday
2019-12-03 | NC
The CRN is a proud participant in Giving Tuesday – a global movement encouraging people to “do good.” This is our fifth year celebrating the event that has inspired millions to give, collaborate, and celebrate generosity. The Tuesday after U.S. Thanksgiving has been designated as the global day for giving back. It was created in response to the shopping frenzy surrounding Black Friday and Cyber Monday.
Here’s a glimpse of the overall impact from 2018’s Giving Tuesday:

150+ countries participated
110+ community coalitions involved
$440M+ dollars raised online

Giving Tuesday – December 3rd, 2019
#GreatGivers Campaign
This year we’ve asked community members to reflect on those who’ve helped along the cystinosis journey. Leading up to Giving Tuesday, we are sharing some of those experiences to recognize the sacrifice, generosity, and selflessness many of us have been fortunate to benefit from. A nod to those #GreatGivers. Click on their stories below.

Ana
Cheryl
Gail
Ina
Jana
Jenn
Sara
Steve

Ways to Help
Your online donation will benefit our cystinosis community as we continue to provide grassroots research, meaningful support and educational programs. However, there are many ways to “give” beyond monetary donations. Visit our How to Help page.
UPDATE: Our #GreatGivers campaign surpassed an online fundraising goal of $5,000!
A special thank you to each person who has supported the CRN in our quest for improved treatments and ultimately, a cure for cystinosis.
Happy Holidays!

Podcast: Staying Positive while living with Cystinosis
2020-02-29 | NC
Welcome to our podcast series – Cystinosis Rare: A Journey into the Unknown.
Lead by the Adult Leadership Advisory Board (ALAB), this series will focus on issues specific to our rare disease.
The initial podcast episode launches on Rare Disease Day – February 29, 2020.
This episode focuses on positive aspects and inspiring stories of adults living with cystinosis. There will be two featured guests: William Brink and Shannon Keizer. William (Bill) will discuss his journey and how his brother inspired him to start weightlifting. Shannon will share her experience from overcoming low mental health to working towards a nursing degree.
ALAB hosts will be Jana Healy, Sara Healy, Steve Scheudler, and Cheryl Simoens. All four are adults living with cystinosis.
The episode will be approximately 1 hour in length.
Subscribe to our YouTube page and receive an email alert when the podcast is available: http://bit.ly/2Y28tsx on Saturday, February 29th. We hope you tune in!

Cystinosis Sessions: Coronavirus, Medication
2020-03-21 16:00 - 17:30 UTC | NC
Welcome to Cystinosis Sessions, a series created by the Adult Leadership Advisory Board (ALAB). These video conferences aim to help adults living with cystinosis and hope to inform stakeholders beyond our patient community about life with this rare disease.
You are invited to ALAB’s very first video conference – Saturday, March 21 at 4pm ET.
Topic: Medication ***UPDATE*** Given the current Coronavirus/COVID-19 climate, we are adding time to discuss questions and concerns with the ALAB team and Registered Nurse and mom of 2 with cystinosis: Anna Pruitt.
Below you will find a draft agenda and Zoom (video conference provider) log in instructions. Please download Zoom prior to the 4pm ET start time. We hope to see you then!
Draft Agenda:

Coronavirus/COVID-19
Procysbi: Advantages & Disadvantages
Medicine containers
Travel tips/hospital visits with Procysbi, Cystagon and/or eyedrops (Cystaran)
Medication odor tips
Personal experiences (time permitting)

Downloading Zoom/Video Conference Prep

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.

Join Zoom Meeting
https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
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Meeting ID: 266 352 3786
Find your local number: https://zoom.us/u/a9v2YRNtU

National Kidney Foundation (NKF) Spring Clinical Meeting
2020-03-25 - 2020-03-29 | LA, United States
*Update* March 10, 2020
Over the weekend, the Centers for Disease Control and Prevention (CDC) updated its recommendations for older adults and people with kidney disease or other severe chronic medical conditions. They note that these groups appear to be at higher risk for experiencing more serious COVID-19 illness. Out of an abundance of caution to protect your health, and the health of the patients you care for, NKF is changing the NKF 2020 Spring Clinical Meetings (SCM) to a Live-Virtual Meeting.
Additional information on the logistics for live-virtual participation will be provided. Because the NKF is providing the conference as a live-virtual meeting, no general registration fees will be waived. However, attendees who purchased lunch workshops or pre-conference course tickets will be reimbursed, please look for additional information on this over the coming weeks.

Virtual: Cystinosis Network Europe 2020 International Conference
2020-04-25 07:00 - 15:00 (America/New_York) | NC
Following much consideration, Cystinosis Network Europe (CNE) and Cystinosis Ireland have decided to cancel the in-person International Cystinosis Conference planned for Dublin in July 2020 due the ongoing situation with COVID-19.
The International Cystinosis Family Conference is now taking place online!
On April 25th from 7am to 3pm ET you will have access to this free event. Available in you own home anywhere in the world, you can now watch cystinosis world experts (with translation) presenting the latest information on managing cystinosis; educational issues; bones and muscles; eyes and possible new treatments; kidneys – pre and post transplant and keeping well; the latest research in gene therapy and other new treatments; pregnancy and male fertility; the impact of COVID-19; and maintaining your mental health.
Confirmed speakers include Prof Elena Levtchenko (Chair), Prof Atif Awan, Dr Rachel Bishop, Prof Don Cairns, Dr Anuj Chauhan, Dr Stephanie Cherqui, Prof Paul Goodyer, Prof Paul Grimm, Dr Patrick Harrison, Prof Craig Langman, Dr Herbie Newell, Dr Joyce Senior, and more.
Register Now. To secure your place and notify the group of translation preferences.
About CNE
Cystinosis Network Europe (CNE) which comprises members from patient organizations across Europe and further afield. Eight European organisations come together to support people with cystinosis and promote research and form a network. We have a number of projects ongoing to support people living with cystinosis and their families; an international conference every two years; and the development of a Community Advisory Board in Cystinosis, with the support of EURORDIS.

57 Miles for Cystinosis
2020-05-02 | DE, United States

Live Video Conference: Dependence, Education & Employment
2020-05-02 16:00 - 17:30 (America/New_York) | NC
Join the Cystinosis Sessions video conference series hosted by the Adult Leadership Advisory Board (ALAB). Starting May 2nd at 4:00 pm ET, the ALAB welcomes anyone impacted by cystinosis. This “session” will focus on:

Education
Employment
Importance of Being Self-Reliant vs Being Dependent
Essential Needs & Medication
General conversation as time allows

To join the meeting:
https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Downloading Zoom/Video Conference Preparation

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.

Podcast Discussion: Coping with Loss & Grief
2020-05-07 | NC
The next topic in the Adult Leadership Advisory Board’s (ALAB’s) podcast series focuses on coping with loss and grief. This is the second installment of the series – Cystinosis Rare: A Journey into the Unknown.
The podcast will be published on YouTube on Cystinosis Awareness Day, May 7th.
Our featured guest and episode leader is Maya Doyle.
Partnering with the cystinosis community for over a decade, Maya is a professor and certified social worker (CSW) specializing in nephrology. Her unique background and set of experiences will make this a conversation you do not want to miss!
In preparation for the podcast recording, please send any questions for Maya or thoughts you’d like to add by emailing Jana at jana_healy752@hotmail.com. Emails will be accepted through April 15th. Your names will be kept confidential and will not be mentioned during the episode.
Subscribe to our YouTube page and receive an email alert when the podcast is available: http://bit.ly/2Y28tsx on Thursday, May 7th. We hope you tune in!

Cystinosis Awareness Day - 3rd Annual
2020-05-07 | NC
Cystinosis Awareness Day is recognized as May 7th for the most commonly linked cystinosis mutation, the 57-kb deletion. This marks the third year we’ve come together on this day to support education, awareness, research, and fundraising for our rare disease.
Months of planning go into Cystinosis Awareness Day. In-person events like 57 Miles for Cystinosis or Miles for Moose require training, sponsors, team coordination, and consume a massive amount of time and dedication. With the latest COVID-19 restrictions, this year’s events have been canceled, postponed or re-imagined. We thank the entire community for your unwavering support – now more than ever.
It’s like our CRN President says, “Cystinosis doesn’t stop. Until there is a cure, neither will we.”
Cystinosis does not ease up during a worldwide pandemic; it does not understand quarantine. Not for one single day, not for one hour, not for one second do bodies living with cystinosis get a break. And we thank you for enduring this ongoing battle with us.
Here are a few ways to help us in this fight:

Like & share our awareness video
Update your Facebook profile frame
Share your cystinosis experience with a friend, neighbor, or colleague (in compliance with your local COVID-19 guidelines)
Read inspiring cystinosis stories
Donate
Start a fundraiser by emailing info@cystinosis.org

If you’d like to learn more about cystinosis resources and research, click here. We are proud to be one of the only organizations to provide comprehensive support, education, awareness, and research relevant to each point in the cystinosis journey.
Thank you!

Cystinosis Sessions: Overcoming Limitations & Goal Setting
2020-06-06 12:00 - 13:30 UTC | NC
The third live video conference takes place June 6 at 12:00 pm ET. The Adult Leadership Advisory Board (adults living with cystinosis) will host the event. Topics will include:

Facing challenges
Peer pressure
Limitations & how to overcome them
Goal setting

Downloading Zoom/Video Conference Prep

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.

Join Zoom Meeting
https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Add the meeting to your calendar by clicking one of the buttons below. We look forward to “seeing” you and hearing you on June 6th!

Cystinosis Sessions: Mental Health
2020-07-11 16:00 - 17:30 UTC | NC
The forth live video conference hosted by the Adult Leadership Advisory Board (ALAB) will discuss Mental Health, Anxiety, Depression, and Coping. Our featured guest is Maya Doyle, MSW, PhD, LCSW. We look forward to seeing you at 4pm ET on July 11th.
Join Zoom Meeting
https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Zoom Meetings Instructions
Desktop, laptop or mobile device (PC, Apple, Android)
Reliable internet
Download Zoom Cloud Meetings Here or your devices app store
Click on the above and have the Meeting ID ready, if you use the link provided, the meeting ID is not needed.

Cystinosis Sessions: Exercise
2020-08-01 12:00 - 13:30 UTC | NC
The Cystinosis Sessions live video series continues on Saturday, August 1st from 12:00pm – 1:30pm ET. The Adult Leadership Advisory Board (ALAB) will lead the discussion open to all community members.
Cystinosis Sessions: Exercise

Importance of exercise
Types of exercise

Strength training
Aerobics
Stretching
Balance training
Moderate vs Intense exercise

And more

Please download the Zoom app prior to the meeting.
Join Zoom Meeting
https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Click on the above and have the Meeting ID ready, if you use the link provided, the meeting ID is not needed.

Podcast: Youth to Adult Transition (part 1)
2020-08-15 | NC
Youth to Adult Transition Part 1- Discussion with Medical Professionals
The third podcast from the ALAB will focus on transitioning from youth to adult medical care. Part one of the youth to adult transition conversation begins with the healthcare professional opinion. Join us and special guests Dr. Paul Grimm from Lucile Packard Children’s Hospital and Stanford University of Medicine and Dori Rivera, PAM (Patient Access Manager) from Horizon Therapeutics.
Hosts from the Adult Leadership Advisory Board (ALAB) are Jana Healy, Sara Healy, Steve Schleuder, Cheryl Simoens.
Beginning August 15,2020 at 9am ET, this link will go live and connect you to the podcast via YouTube: https://youtu.be/zEMdQmxR0UU.
Thank you for your interest.

Podcast: Youth to Adult Transition (part 2)
2020-08-22 | NC
Youth to Adult Transition Part 2- Q &A Panel with Adults Living with Cystinosis
Part two of the youth to adult transition discussion is focused on personal experiences of adults living with cystinosis. Joining our panel on behalf of the adult community are Serena Scott (via mum Sue Scott), Kevin McCalla, Ashley Abedini, and Joe Rumney.
Hosts from the Adult Leadership Advisory Board (ALAB) are Jana Healy, Sara Healy, Steve Schleuder, Cheryl Simoens.
Please check back. Link to podcast coming soon.
