Foundation Raises Funds for Cystinosis in the Most Adorable Way
With a disease as rare as cystinosis—as in, only 2,000 people around the world are believed to have it rare—one of the biggest hurdles to raising funds for research has…
Cystinosis Treatments Are in the Works at NIH
Mika Covington was diagnosed with cystinosis when she was 10 months old, and has struggled with its effects throughout her life. Cystinosis is usually diagnosed before the patient's second birthday. It's…
Editor’s Choice: 3 Powerful Messages From Inspiring Women
It's officially April and it's officially the WEEKEND! PW Contributor Alexis writes of how her experience with PTSD relates to going through the process of diagnosis and treatment of chronic…
Sangre y Tripas? Espere hasta que usted vea cómo esta artista holandésa lidia con la cistinosis
Rare Conect explica la vida de Annie Kwakkel que nació con cistinosis,una enfermedad genética que afecta aproxima a 1 en 100,00 a 200,000 recién nacidos en todo el mundo. Hoy…
Young Daughter with Cystinosis Inspires Mom
Recently, a website called The Mighty invited its readers to write a letter to the rare disease or mental disorder that affected them or a member of their family. One mother…
When Your Screaming Child Reaches for Water
2016 Rare Disease Week on Capitol Hill. Amid all the medical experts, pharmaceutical executives, patients and patient advocates, there's a boy of 10. He sits quietly during the long hours,…
Editor’s Choice: Rare Disease Day, Newly Diagnosed and Paleo Dieting
Happy Rare Disease Week friends! This week we have an exciting article on the first day of Rare Disease Week on Capitol Hill (though technically, the first day was at the…
Would You Go This Far To Save Your Child’s Life?
Why does time always have to run so short? Anyone who has ever experienced kidney dialysis knows the grueling process--the waiting game you play until a kidney becomes available for…
Una de las mejores razones para ver la belleza en esta chica anormal
A los 5 años de edad, Hadley Alexander no es normal. Cada mañana, su día comienza oficialmente a las 7 am Ella convenció despierto por sus padres y, a través…
Fitness and Family Help One Woman Overcome Cystinosis
On their face, exercise and illness would appear to be diametrically opposed states of mind. But there’s plenty of anecdotal and scientific evidence to suggest that overall physical fitness can…
Goodbye to the Dog Days of Summer, Says Girl with Cystinosis
Life with chronic illness requires adaptation, and for kids diagnosed with cystinosis, adapting starts young. Sarah Larimore was barely out of infancy when her parents first heard the word “cystinosis.”…
Battle for the Blades Scores Big for Cystinosis
Winters may be long in Canada, but the residents of Ontario’s Saugeen Shores are hardly cold-hearted. On April 1st, 2016, the Saugeen Shores Skating Club is inviting Ex-NHL players, figure…
How to Not Die from Cystinosis: New Research on Treatments Offer Hope
The National Institutes of Health (NIH) recently published an important finding from a clinical trial that could affect those with cystinosis. The research is certainly worth reading--especially if you or your loved one has cystinosis. But…
Editor’s Choice: Art & Cystinosis PLUS Treatment Alternatives for Cystic Fibrosis
Happy First Week of February! Do you have a rare disease and find art as an outlet for you? Are you always fighting to find more ways to treat your…
You Won’t Believe What Happened to These Twins With Cystinosis
As any parent of a child with cystinosis will tell you, life with the disease can be like a roller coaster. Some days are filled with highs; others with lows.…
Inspiring Art Shares Unique Perspective On Cystinosis
I’m sure you’ve heard that old saying; a picture is worth a thousand words? It’s kind of a cliché. It’s also kind of wrong. Some pictures are worth far, far,…
When Your Sister Has Cystinosis, What Can You Do? Donate a Kidney!
When Cheryl Simoens was born, she became one of a small number of babies born each year with cystinosis, a chronic and genetic kidney disease. Cystinosis is characterized by an accumulation…
He’d Rather Not be One-in-a-Million
When Hagan's mom tells the 12-month-old Irish boy that he's one in a million, she isn't kidding--and it's not exactly a compliment, either. Those odds refer to the fact that…
The Best Kind of Love is the Kind Where Kidneys Are Donated
Serendipity (n): the occurrence and development of events by chance in a happy or beneficial way. As many of you probably know, the journey to a cystinosis diagnosis is no walk…
Editor’s Choice Weekend Roundup: Adorable Wee Ones, Crazy Songs, and More!
We've seen great memes from the community, an awesome mom who is trying to raise awareness for CVID through a viral video, and so much more. Check out the highlights…
Editor’s Choice Weekend Roundup: Meme’s, Viral Videos, and More!
We've seen great memes from the community, an awesome mom who is trying to raise awareness for CVID through a viral video, and so much more. Check out the highlights…
1 Terrific Reason to Call This Abnormal Girl Beautiful
5-year-old Hadley Alexander isn’t normal. Every morning, her day officially begins at 7 a.m. She’s coaxed awake by her parents and, through a tube in her stomach called a g-tube,…
