The Rare Disease Day video provided an opportunity for aHUS patients around the world to voice what aHUS research was needed , and, in this unique way, brought an extensive and varied response from aHUS patients and families from several countries.
Since Rare Disease Day the alliance has been analysing and responding to the questions raised in a series of blogs on its website ( see below links to all the blogs written to date ) and shared them widely within the aHUS social media community.
These blogs do not pretend to have the answers to the questions , indeed in many cases they raised more questions , but in doing so have they helped shape them into valid research topics to go forward ,along with those raised in the 2016 Global Poll ;and the “Orphanet Article” list* , into a truly global aHUS Patients Research Agenda.
More about that to come once the two outstanding questions are addressed. In the meantime, if a viewers have not seen the previous articles here is a summary list.
Links to blogs written so far,together, in some cases, with further images extracted from the 2017 Rare Disease Day video.
Prevalence and Incidence of aHUS
Cure for aHUS was also raised by Bethany of Greenville South Carolina USA
Access to treatment for aHUS by all
Marciek of Poland also raised this question
Justifying the price of treatment of aHUS
Psychological impact of living with aHUS
Alternatives to eculizumab
Penetrance of aHUS in Families
Skyler asked another question about this
Ineffectiveness and resistance to eculizumab
Allergy and Immunogenicity
Long term side effects of eculizumab
Recovering from aHUS onset
Rebecca of Fort Worth USA also raised this issue
Withdrawal from aHUS treatment
Research and education with aHUS
Secondary aHUS diagnosis
Recovering from aHUS
Affordable care for aHUS
aHUS and Kidney Transplants
Remission in aHUS
Jane Kruse of Germany also asked a question about this.
as did Beren of Istanbul Turkey
Vaccinations when immunosuppressed
aHUS and pregnancy
aHUS Patients’ Evidence
Genetic testing in aHUS Families
aHUS and potty training
* Orphanet article about aHUS research topics click HERE
Learn more, watch our aHUS Global Patient Voice – 2017 Rare Disease Day Project
