Updates

February 26, 2021February 25, 2021
Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from a ... Read more
February 25, 2021February 23, 2021
Becoming Rare: From Diagnosis to Acceptance, to Advocacy

Rare is steak cooked to an internal temperature of 120 to 130 F. Rare are opals found in the Nevada desert. Rare is finding out ... Read more
February 24, 2021February 24, 2021
COVID Reinfection Possibly Due to Immunosuppressant Use for AAV

A woman was potentially reinfected with SARS-CoV-2 — the virus that causes COVID-19 — while on immunosuppressive therapy for ANCA-associated vasculitis (AAV). This case suggests ... Read more
February 23, 2021February 23, 2021
Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research ... Read more
February 22, 2021February 22, 2021
Avacopan May Be Effective Option to Steroids for AAV, Phase 3 Trial Finds

Use of avacopan can increase remission rates and improve kidney function in people with ANCA-associated vasculitis (AAV), while limiting the toxicity associated with ... Read more

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January 11, 2018

Early Diagnosis of AAV Symptoms Decreases Risk of Renal Damage, Mortality

News

A retrospective study has found an association between the length of prodromal phase – where patients experience non-specific symptoms before more specific disease signs develop – and mortality in antineutrophil cytoplasmic antibody (ANCA)-associated vasculitis (AAV) patients. This finding underscores ... Read more

Updates

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

Becoming Rare: From Diagnosis to Acceptance, to Advocacy

COVID Reinfection Possibly Due to Immunosuppressant Use for AAV

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Avacopan May Be Effective Option to Steroids for AAV, Phase 3 Trial Finds

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How an RV Helped Us Solve COVID-19 Travel Dilemmas

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

Factors Predicting Serious AAV Infections Found to Vary Over Time

Pharmacists Are My Unsung Heroes of the Medical Profession

Pandemic Won’t Stop Rare Disease Day on Feb. 28

Models May Help in Weighing Risks of Rituximab’s Long-term Use in AAV

How Constant Positivity Can Harm Our Emotional Well-being

Infections Triggering MPO-AAV Should Be Considered in Treatment, Review Suggests

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

I’m Proud to Be a Face Mask Trendsetter

COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say

Vasculitis Foundation to Mark Awareness Month With ‘Patient Heroes’ Cards

My Anxiety Is Debilitating, but One Day I Will Overcome It

Immune Cell Ratio Can Help Identify Patients at High Risk of Infection

When My EGPA Symptoms Flared, I Was Hesitant to Call My Doctor

NORD’s Caregiver Respite Program Continues Through Pandemic

Phase 2 Study of Vilobelimab Fully Enrolled in Europe

Reminding Myself That I Am Braver, Stronger, and Smarter

NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum

FDA Approves Riabni, 3rd Rituxan Biosimilar to Treat GPA and MPA

‘Get Well Soon’ Doesn’t Work for Me

Dosing Begins in Phase 3 Trial of Fasenra, an Asthma Therapy, to Treat EGPA

The Light at the End of 2020

Extended Glucocorticoids Use Linked to More Infections in Study

5 Holiday Survival Tips for Those With Vasculitis

Early Diagnosis of AAV Symptoms Decreases Risk of Renal Damage, Mortality