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July 15, 2019July 16, 2019

Review Provides Insight into Alport Patient and Research Communities

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The care of Alport syndrome patients at specific critical junctions — diagnosis, transition to adult care, and pregnancy — is among the topics of a recently published review ... Read more

July 10, 2019

Macedonian Gaucher Activist Publicizes Plight of Rare Disease Patients

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The challenges Vesna Aleksovska faced when she decided a decade ago to help fellow Macedonians with rare diseases were so daunting, they would have scared off all but the ... Read more

July 8, 2019July 8, 2019

New COL4A5 Mutation Linked to X-linked Alport in Chinese Family

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A new genetic variant of the COL4A5 gene was identified in the family of a Chinese boy with atypical X-linked Alport syndrome. The case was reported in the study ... Read more

July 3, 2019July 3, 2019

World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients

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It wasn’t until Gordana Loleska’s son David was 14 years old that doctors in their native North Macedonia diagnosed his kidney, vision, and hearing problems as Alport syndrome. Although ... Read more

July 2, 2019July 2, 2019

Sulfatides May Play Important Role in Early Stages of Alport Syndrome, Mouse Study Says

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Scientists found two molecules called sulfatides in the kidneys of a mouse model of Alport syndrome that may play an important role during the early stages of the disease. ... Read more

June 26, 2019June 26, 2019

NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala

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A violinist with vasculitis, two Texas politicians and a pharmaceutical company whose marijuana-derived therapy helps kids with Dravet syndrome were among winners of the 2019 Rare Impact Awards. Officials ... Read more

June 24, 2019June 24, 2019

Ongoing Research Testing Several New Therapies for Alport Syndrome

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While Alport syndrome currently remains without a cure, ongoing research is testing several strategies that hold promise, a review study shows. The review, “New therapeutic options for Alport syndrome,” ... Read more

June 20, 2019

Eurordis Unveils Integrated-care Initiative for Rare Disease Patients

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Europe’s umbrella organization for 800 rare disease associations has developed a sweeping initiative to help the continent’s 30 million rare disease patients and their caregivers learn about their conditions, ... Read more

June 17, 2019

‘Rare Barometer’ Program Helps Eurordis Shape EU Rare Disease Policy

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People with rare diseases know that the right government policies can make a big difference in the quality of their own lives, and those of their caregivers. But most ... Read more

June 17, 2019June 17, 2019

New Mutations, Possible Links to Alport Syndrome Progression Found in Chinese Families, Study Shows

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Researchers have found six new mutations underlying Alport syndrome (AS) in seven Chinese families, as well as drawing possible correlations between the type of mutations involved and disease progression, ... Read more

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