aHUS Alliance Seeks Questions for Its Rare Disease Day 2022 Project

Yedida Y Bogachkov PhD avatar

by Yedida Y Bogachkov PhD |

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Rare Disease Day 2022 | aHUS News | aHUS Alliance | illustration of woman using megaphone

For this year’s Rare Disease Day on Feb. 28, the aHUS Alliance is asking patients and caregivers to join them in their project to showcase questions from those affected by atypical hemolytic uremic syndrome (aHUS).

This project is aimed at raising awareness for those affected by aHUS. Patients and caregivers are being asked to finish the statement “I would like to know…” with their own questions regarding the disease.

Submissions are due by Feb. 17, but the organization is encouraging participants to submit questions as soon as possible, so that one or two questions can be showcased each day on its webpage until Rare Disease Day. A sample submission is on the alliance’s webpage.

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Patients and caregivers can participate by sending their photos, names, where they’re from, and their question to Jeff Schmidt, an aHUS Alliance volunteer, at [email protected]

For the 2017 Rare Disease Day, Schmidt helped create a slideshow of 80 entries from 18 countries. This year the alliance would like to recreate that slideshow with new questions from aHUS patients, including any new patients who have been diagnosed in the last five years in various countries around the world.

This project allows for a varied and extensive response from the global aHUS community. The alliance believes that only those affected by this rare disease can offer authentic questions to the medical community and research teams.

The aHUS Alliance team will help answer some participants’ questions and will also reach out to experts to provide in-depth responses to many questions.

“If you’re a person living with atypical HUS, or have a loved one diagnosed with aHUS … your participation is vital to make this project both meaningful and informative,” the alliance stated. “We welcome ALL those affected by aHUS from our global community to join in this 2022 Rare Disease Day project.”