Living with cystinosis can be challenging, so support is vital for the patient, caregiver, and family. Although cystinosis is a rare disease, there are resources to help your patients manage ocular symptoms, as well as educate and support them.
Sharing helpful information with your patients can help them navigate the complexities of this disease.
Keeping track of the progression of light sensitivity and other symptoms is a good way for you and your patient to assess the status of corneal crystal buildup. Share this Photophobia and Eye Symptoms Tracker with your patients so they can understand changes over time.
Photophobia and Eye Symptoms Tracker
Download this coordination of care resource for your patients.
Coordination of Care ResourceHaving social support may help to improve patient well-being and foster the ongoing ability to manage challenges.
Cystinosis Research Network is dedicated to supporting and advocating for research, providing family assistance, and educating the public and medical community about cystinosis.
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The Cystinosis Research Foundation is dedicated to finding better treatments and ultimately a cure for cystinosis, and to educating the public and medical community to ensure early diagnosis and proper treatment.
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NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
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The Center for Chronic Illness sponsors a web-based support group for adults with cystinosis called Living with Cystinosis.
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The Cystinosis Eye Care Specialist Directory aims to connect patients with healthcare professionals knowledgeable about ocular care in cystinosis.
Recordati Rare Diseases created this physician directory to help patients and caregivers find a healthcare professional that fits their needs. Patients can access the directory through cystinosisinfocus.com.
If you are a healthcare professional experienced in treatment and management of ocular manifestations of cystinosis and would like to be a part of the Cystinosis Eye Care Specialist Directory, please complete this enrollment form. HCPs will be listed in the directory for a maximum of two years, with the ability to opt-out at any time. If you have questions, please contact us at locator@cystinosisinfocus.com.
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