Rare Disease Day will be marked around the world on 28 February 2018 and the aHUS Alliance is pleased to announce a global project to raise awareness about the rare disease atypical hemolytic uremic syndrome (known also as aHUS or atypical HUS). Recognized annually on the last day of February, encourages patients and their families, medical professionals, researchers, government officials, and companies developing treatments for rare diseases to join together to focus attention on rare diseases as a public health issue.
The 2018 Rare Disease Day theme is research, and all aHUS patients and their families are invited to participate in a aHUS Alliance project focused on 5 questions to aid aHUS research. This year is the 11th such event coordinated by EURORDIS, and in 2017 the global theme was also research. Our Rare Disease Day 2017 project was led by Jeff Schmidt (aHUS Alliance volunteer, USA) and resulted in a video slideshow of 80 entries from 18 countries. (Click HERE to view our 2017 Rare Disease Day project, see more on the aHUS Alliance Atypical HUS Patient Voice channel on YouTube. Generously contributing his time and talents for another global aHUS patient and family video to raise awareness for Rare Disease Day 2018, Jeff Schmidt noted, “Last year we had everyone ask questions they wanted researched. This proved very valuable as the aHUS Alliance collected and researched all the questions and wrote blogs on the aHUS Alliance website. Those who participated really had their voice heard!”
People from all nations are encouraged to take part in this aHUS Alliance 2018 Rare Disease Day project, and details are below.
Here are the 5 questions:
- When did you have your first aHUS attack (month and year)? How old were you?
- What was suspected to trigger your aHUS (virus, pregnancy, E. coli, medication, surgery, unknown, etc)?
- What mutation or mutations do you have? (Unknown? Haven’t been tested?)
- What treatment are you receiving for your aHUS (Eculizumab, plasmapheresis, something else, none)? How often?
- Are/Were you on dialysis? If so, how long? Have you had a kidney transplant?
Please also send your name, where you are from, and a photo so Jeff can will create your slide entry to be included this aHUS Alliance project. The answers to the questions should be short (able to fit in the text box), and by sending in an entry you give permission for it to be made available to the public. This project giving important information into the international aHUS Patient Voice will be shown around the world, with its release planned for Rare Disease Day, 28 Feb 2018
Send your info, a photo, and answers to the 5 questions to firstname.lastname@example.org. Entry deadline is 10 February 2018.
aHUS Alliance – Rare Disease Day 2018
Entry from Erica Schmidt, USA