There was a time when most children diagnosed with a rare condition did not live until adulthood. But now, with advances in medicine, many individuals are living long, full lives…
The Problem Lysosomal storage disorders (LSDs) affect approximately one out of every 7,000 people. There are around 50 different types of LSDs. These include Fabry disease, Batten disease, Gaucher disease,…
The 2019 Cystinosis Research Foundation Day of Hope Family Conference This conference for cystinosis patients and their families is a unique opportunity for attendees to learn the latest in cystinosis…
A few months ago, Patientworthy editor Kathy Devanny asked me some important questions about the assistance I receive from Patient Access Managers as a person living with the rare disease…
According to a recent article in the Sunderland Vibe, the MRC Developmental Pathway Funding Scheme (MRC) was created to carry out the work of Professor Roz Anderson, who recently died of…
One of my better friends within the cystinosis community is Mika Covington. We met at a cystinosis event in 2016. I had read some of Mika’s entries posted in her…
Cystinosis Cystinosis is a rare disease which is caused by a buildup of cystine in the body's cells. This buildup impacts various organs including the brain, eyes, liver, kidneys, and muscles.…
For those with a complicated medical diagnosis, state-funded health insurance bodes little practicality. Patients living with rare and chronic disease must schedule visits to multiple specialty clinics and physicians, especially…
What started as a peculiar and insatiable thirst for water led to a rare disease diagnosis for a Denver family. Although they weren't expecting this challenge, they're ready for the…
This wonderful story was brought to Patient Worthy by our partners, the Cystinosis Research Network (CRN). The season of giving started off in an unconventional setting for the Moore Family. Chandler…
According to a story from Inside Philanthropy, a recent case study was conducted in order to determine the main sources of funding for rare disease research. This broad ranging study…
Many persons living with rare disease require a transplant of certain organs. Though this is not a cure for the rare disease Cystinosis, a kidney transplant is often required once the disease…
Another article previously published under "Featured Adult: Rebekah Palmer's Story" in The Cystinosis Advocate/ Volume 10, Issue 1/ Spring and Summer 2017: I feel an obstacle in being the adult patient…
Besides the obvious need for ties within the medical, pharmaceutical, and social industries, I have always wondered internally why it is so necessary that parents, adults, children, and loved ones…
Jim and Melea Martin are Outreach Partners with Future by Design, a family support group organized by the Cystinosis Research Network. Melea has cystinosis and Jim is her husband. We…
According to a story from CBS News, Clay Emerson, from New Jersey, is hoping to use Father's Day in order to raise awareness about his three year old daughter's rare…
To read part one of this story on cystinosis, click here. Briana and Ashley are two adult women from opposite regions in the United States. Briana lives close to her…
She wears a lacy white dress with a long, white veil. Her beautifully shaped eyebrows arc over long-lashed eyes. Her smile, illuminated by bright red lipstick, speaks of the happiness…
On Cystinosis Awareness Day, Clinton Moore of Delaware, who is also president of the Cystinosis Research Network, will attempt to walk 57 miles in a single day. This event will…
In order to honor Cystinosis Awareness Day, which takes place on May 7th each year, a man will attempt to walk 57 miles in a single day in order to…
Presenting the CRF 2018 Day of Hope Family Conference The event will be an opportunity for cystinosis patients and their families to share their experiences with one another and build…
As a female Bible college student, an outside marker of pious and godly womanhood consisted of having a male significant other. While this is not strictly a religious sentimentality about…
As an adult living with rare disease, there have been significant gaps in my employment history. I am sure many adults with health complications experience their workforce years this way,…
The Cystinosis Research Network (CRN) is offering scholarships to prospective college students who have been impacted by the condition. The organization offers two different scholarships, one for a student that…
….Now what? A master’s degree in teaching? Would that even make sense for my life if I couldn’t even work an eight hour day and was currently seeking employment for…
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