Integrating a greater aHUS patient voice
A final question in the RDD2022 video series on how to integrate a patient voice of experience into aHUS Pharma and…
Advocacy punching above its aHUS weight
There is so much chat these days about what things should be like after the pandemic. Though it does seem at…
Voicing a Global aHUS Vision
Прекрасным будет тот день, когда наше осознание серьёзности заболевания аГУС/кТМА* поможет добиться того, что пациенты во всем мире смогут позволить себе…
No one said it would be easy
The reluctant advocate story continues: aHUSUK had received the Evaluation Consideration Document the week before Rare Disease Day 2014 and we…
Challenges for the new aHUS year- “Bring it on”
Another year has ended for those affected by aHUS. For some sadly it would have proven to have been their last.…
ESKD 2018 Global Health Summit in UAE
Mr Kamal D. Shah, founder of Atypical HUS India and co-founder of India’s largest network of dialysis clinics, was…
The Many Faces of Atypical HUS: Rare Disease Day 2018
What happens after the world annually marks Rare Disease Day on the last day of February? We carry on…
Creating Your Advocacy Footprint in the Rare Disease Arena
What does the term ‘rare disease advocacy’ mean to you? Patients and caregivers speaking up on social media or…
Pathways of Patient Engagement – 4 Myths of Rare Disease Advocacy: Part 3
4 MYTHS of Rare Disease Advocacy: Digging deeper into Common Misperceptions Pathways of Patient Engagement & Recruitment…