The aHUS alliance website has reached its first anniversary.
Although some of the first blogs have dates preceding 28 May 2016 ,they were written in preparation for the site going live and appearing in public on this day.
The aims of the website were set out on that first day : “Whilst national aHUS advocacy groups remain paramount for supporting aHUS patients and their families in each country, the alliance is there to support them through education and share of knowledge, as well as provide links to international aHUS clinical and research networks.
This website will play a big part in doing that.
This website will also reflect and demonstrate the action being taken around the world to raise the profile of our rare disease, and the ways to deal with its impact on so many lives. Running a patient support organisation is not an easy thing to do.
All organisations affiliated to the alliance depend on volunteers, who have themselves been deeply affected by aHUS in some way or other, but who are willing to give their time, knowledge and skills to help good to come together for all.”
www.ahusallianceaction.org has done what it can to fulfill that aim in its first year by Connecting Informing and Collaborating.
It supported collaborations on a second aHUS Awareness Day and more recently Rare Disease Day . In doing so it connected with more and more of those affected by aHUS and encouraged more and more public patient engagement.
The website has reported on aHUS issues in the developing world and the inequities of lack of access to complement inhibitors to the majority of those 15000 to 40000 with aHUS around the world. It has provided the most comprehensive, and well read, ,horizon search for new therapies for aHUS ,which are likely to develop to fruition in the next five years.
The website has also helped the alliance facilitate the first ever aHUS patient research agenda by building on its collaboration with the Scientific Advisory Board of the aHUS Registry, connecting with patients and families in the 2016 aHUS Poll and uniquely ,in the aHUS Rare Disease Day video; gathered patients’ thoughts on what aHUS issues need more research.
This has all be done in an informative way to increase aHUS knowledge for all who seek it.
Twelve months ago on the official aHUS website launch day an aspiration was declared in the statement “who knows what the future will bring; but whatever it might be,the alliance’s new window to the world of aHUS is now here to become an important part of it.”
The ever increasing views of the website,and its linked social media channels Facebook, Twitter and Youtube, suggest that it is becoming more important to thousands of people affected by aHUS
|If you have any comments , questions or news about any of the articles, or are interested in being a part of global aHUS advocacy aHUS alliance would be very pleased to hear from you. Contact us direct on : info@aHUSallianceAction.org
Atypical HUS Clinical Channel Researchers & Clinicians from around the world present aHUS topics: YouTube
aHUS Global Patient Voice News & Insights into Atypical HUS: YouTube
Facebook: aHUS Alliance 24 September is international aHUS Awareness Day
Follow the campaign on Twitter @aHUS24Sept using hashtags: #aHUS24Sept #SHUa24Sept