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2 articles from the last 90 days matching "hae"

AdvocacyRSS5 days ago

Feeling Trapped by HAE? I Have Some Tips for You

This article offers practical advice for people with hereditary angioedema (HAE) who feel limited by their condition. The author encourages patients to focus on what they can do rather than what they can't, and suggests ways to live a full life while managing HAE symptoms.

WHY IT MATTERSHAE patients often experience social isolation and emotional burden from unpredictable swelling attacks; this article addresses the psychological impact and provides coping strategies to improve quality of life.
ℹ Good to knowHereditary AngioedemaRead →
AdvocacyRSSMar 26

NORD Advances Policy Leadership with Strategic Appointments to Strengthen Rare Disease Advocacy

The National Organization for Rare Disorders (NORD), a major patient advocacy group, announced new leadership positions to strengthen its work in rare disease policy. Michael J. Beard was appointed as Vice President of Federal and Global Public Affairs. These leadership changes are designed to help NORD better represent patients' interests in government and international discussions about rare diseases.

WHY IT MATTERSStronger NORD leadership in policy and advocacy can directly influence which rare diseases get research funding, how quickly new treatments are approved, and what insurance coverage looks like for rare disease patients.
ℹ Good to knowRead →

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