Rare Disease Day Video 2017 Reprise

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