I am sharing my journey to give a voice to patients who suffer from extreme poly-pathology and are often left behind by the medical system. I know that my medical…
In the past, there have been a variety of research studies exploring and working to learn more about cystinuria, a rare genetic condition causing cystine, an amino acid, to accumulate…
Soleo Health has just announced that they have been provided access to lumasiran by Alnylam Pharmaceuticals. This access will allow the company to administer the treatment to patients diagnosed with…
Did you know that there are a variety of conditions which can occur in tandem, or even because of, another condition? According to Renal & Urology News, this may be…
In the past, there have been few effective treatments for patients with primary hyperoxaluria type 1 (PH1), a genetic disorder causing kidney damage and failure. But, according to News Medical,…
A new joint clinicial investigation has come out with a reminder to patients with primary hyperoxaluria type 2 (PH2) to adherr to the requirements regarding careful follow up proceedings. This…
The longer a patient sees a doctor, the more their initial trust, confidence, and comfort with them grows. This is amplified for patients living with rare conditions as doctors visits…
What is Distal Renal Tubular Acidosis? Distal renal tubular acidosis (dRTA) is a rare condition which affects approximately 1 in every 100,000 people worldwide. It is caused by a build up…
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