Patients both desire and need to be involved at every level of their healthcare. Within the last decade there’s been a trend toward patient involvement with the broad…
Patient involvement needs to be integrated across all areas of research and at early stages of planning clinical trials. When patient engagement is in the atypical HUS arena, what considerations make outreach a bit different for advocacy regarding this ultra rare disease?
Atypical HUS - RESOURCES About aHUS - General Info Info Centre Know aHUS: Know US aHUS PRESS KIT Image Gallery: Atypical HUS info & advocacy Atypical HUS 1.0 - to…
The aHUS Alliance presents issues and information from varied perspectives within the atypical HUS arena. Amplifying the patient voice in over 30 countries, we present this series of original content on topics related to the rare disease atypical HUS with articles focused on key interests of patients, caregivers, physicians, researchers and other stakeholders,
Drug Discovery and Market Factors within the Atypical HUS Arena E: info@aHUSallianceAction.org The aHUS Alliance is an international group of people and organizations interested in the advancement of research…
Drug Discovery and Market Factors within the Atypical HUS Arena E: info@aHUSallianceAction.org Atypical HUS - Global Rare Disease Advocacy The aHUS Alliance is an…
What does the term ‘rare disease advocacy’ mean to you? Patients and caregivers speaking up on social media or at various meetings, addressing needs for a particular rare…
The Last in the aHUS Alliance Four Part Series Patients Included: Reality or Unmet Goal? 4 MYTHS of Rare Disease Advocacy: Digging deeper into Common Misperceptions Although…