Early in 2017 aHUS alliance has identified access to treatment as a key concern for patients, families, and advocacy groups. Access issues differ between different countries and generally between the developed and developing world. A report on a major investigation by the alliance’s Linda Burke about the current state of play for complement therapies for complement diseases reveals more hope for those affected by aHUS.
Patient-centered care includes establishing a respectful relationship where patients feel involved, informed, and partners in their care. Much has been written about patient engagement and its value, and patient organizations can help facilitate patient involvement at all stages and with all aspects of research, drug development, and clinical trials.
The alliance website recognises known aHUS patient associations and groups and organizations ,and , in doing so provides networking assistance to allow those with an interest in aHUS to establish and develop a direct connection through their own national public patient engagement.
Collaboration and connectivity among stakeholders was central to the first aHUS patients’ research agenda , resulting in the Orphanet article “An innovative and collaborative partnership between patients with rare disease and industry-supported registries: the Global aHUS Registry” The 2017 Global Survey and the 2017 aHUS Rare Disease Day video project are building on it.
Whether it is access to treatment for all , understanding a disease and what it is like to live with it , or giving a voice for patients- Good will come together.
*The featured image is of the first aHUS alliance logo on its creation in 2013.
