Cystinosis Awareness Day is on May 7: Spreading Rare Disease Awareness

May 7, 2023 will be recognized as Cystinosis Awareness Day. This will be a day to spread awareness about the rare disease cystinosis among the general public and the medical field. The event is an effort at awareness and fundraising that takes place around the world. Continue reading if you are interested in learning more about Cystinosis Awareness Day and how you can contribute.

About Cystinosis

Cystinosis is a type of lysosomal storage disease which is characterized by the abnormal accumulation of the amino acid cystine in the body. The disease is caused by mutations affecting the CTNS gene. This disease leads to the formation of cystine crystals in different areas of the body, particularly the cornea. Severe cystinosis can cause major symptoms early in life, such as kidney failure, growth and developmental impairments, diabetes, muscle atrophy, reduced skin and hair pigment, blindness, impaired sweating, and inability to swallow. Treatment of cystinosis includes cysteamine, which can impair the growth of crystals in the body; sodium citrate is also used to control blood acidity. If kidney failure occurs, dialysis and ultimately a kidney transplant are necessary for survival. To learn more about cystinosis, click here.

Getting Involved

The Cystinosis Research Network (CRN) a Patient Worthy partner organization, has several ways that you can get involved and help recognize this special day. Here’s how you can get started:

  1. Participate in CRN’s “One Thing” Campaign. This campaign can involve your social media accounts as well as outreach into your local community. The goal of the campaign is to share one fact that you think everyone should know about the disease among your network, social media, school, healthcare providers, or your community as a whole.
  2. Nominate a patient in your life (or even yourself, if you are one) for the Cystinosis Warrior Impact Program. This is a broad-ranging support program for patients that aims to assist them in many different aspects of life. Learn more about it here.
  3. Start fundraising for cystinosis. You can set up a fundraiser pretty easily on social media platforms like Facebook and Instagram. You can also shoot an email to Jonathan Dicks ([email protected]) to learn more about hosting an event.

So what are you waiting for? Play your part in spreading awareness for this rare disease. Learn more info about the day here

courtesy of the Cystinosis Research Network

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