Positive Results from Waldenstrom’s Macroglobulinemia Treatment Trial Means it will Continue

According to a recent article, the trial studying the success of CLR 131 to treat Waldenstrom’s macroglobulinemia has shown promising results, allowing it to continue. Waldenstrom Macroglobulinemia (WM) Waldenstrom macroglobulinemia…

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A New Standard for Corticosteroid Dosing for Childhood-Onset SLE with Proliferative Lupus Nephritis

Recently, an international group of pediatric rheumatologists and nephrologists met and created a consensus on a standard for a steroid-dosing regimen to treat childhood-onset systemic lupus erythematosus with proliferative lupus…

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Study Shows GPA and Tuberculosis Might Have Similar Features
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Study Shows GPA and Tuberculosis Might Have Similar Features

According to a recent article, a new study shows that granulomatosis with polyangiitis (GPA) and tuberculosis might have shared features, making diagnosis more difficult. Granulomatosis with Polyangiitis (GPA) Granulomatosis with…

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New Therapies Bring Hope for Improving the Outcomes of Pediatric Patients with Rare Disorders

According to a recent article, at the American Academy of Neurology annual meeting in 2022, the importance of disease-modifying therapies for patients diagnosed with rare pediatric disorders was highlighted. Lisa…

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Patient Story: Living with Dystonia

Recently, an article highlighted one man’s life journey after being diagnosed with rare cervical dystonia. Dystonia Dystonia is a chronic movement disorder, existing in the same family as the more…

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Patient Story: Liver Transplant Allows Girl Diagnosed with Biliary Atresia to Celebrate her First Birthday
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Patient Story: Liver Transplant Allows Girl Diagnosed with Biliary Atresia to Celebrate her First Birthday

According to a recent article, a child with biliary atresia was able to celebrate her first birthday following her liver transplant. Biliary Atresia Biliary atresia is a condition occurring in…

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Study Highlights Experiences of Patients Treated with ADV7103 for Distal Renal Tubular Acidosis
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Study Highlights Experiences of Patients Treated with ADV7103 for Distal Renal Tubular Acidosis

According to a recent article, a new study is demonstrating how the effects of distal renal tubular acidosis impact a patient’s quality of life. Distal Renal Tubular Acidosis (dRTA) Distal…

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New ALK-Positive Lung Cancer Patient Resource from LUNGevity
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New ALK-Positive Lung Cancer Patient Resource from LUNGevity

According to a recent article, LUNGevity has just launched a resource platform that provides information, news, and community for patients diagnosed with ALK-positive lung cancer. ALK Positive Lung Cancer Anaplastic…

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Researchers Investigate Pentosan Polysulfate Sodium to Treat Maroteaux-Lamy Syndrome
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Researchers Investigate Pentosan Polysulfate Sodium to Treat Maroteaux-Lamy Syndrome

  According to a recent article, researchers at the WORLDSymposium revealed they are looking into using pentosan polysulfate sodium to treat Maroteaux-Lamy syndrome. MPS VI (Maroteaux-Lamy Syndrome) Maroteaux-Lamy syndrome is…

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Investigators Introduce Tool for Establishing Gene-Disease Relationships in Rare Disease
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Investigators Introduce Tool for Establishing Gene-Disease Relationships in Rare Disease

  According to a recent article, investigators have proposed a checklist that will aid in determining the strength of potential gene-disease relationships for rare disease. The Need It has already…

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