aHUS project for Rare Disease Day 2020

aHUS Alliance Global Video Project for Rare Disease Day

29 February 2020

 

Rare Disease Day 2020 is coming soon!  The world will join together on 29 February to raise awareness for rare diseases like atypical hemolytic uremic syndrome (aHUS). The aHUS Alliance, an umbrella group for atypical HUS advocates and organizations in over 30 countries, will create a video slideshow for this year’s Rare Disease Day for patients and aHUS family caregivers to share their 20/20 vision on want to see for advancements in 2020. Project lead is Jeff Schmidt (USA) who is also the chair for assisting countries who wish to organizing aHUS advocacy efforts in the rest of the world – aHUS Alliance: R.O.W.

 

What do you ‘see’ as needs for improvement or advancements regarding aHUS through 2020?

Through the global aHUS Alliance we invite those who want to participate in this year’s Rare Disease Day video slideshow.  What’s your vision for a better year ahead for those with atypical HUS? Send your photo along with where you are from, and what advancements your “20/20” vision would like to see in the year 2020.  Your vision does not need to be unique, just something you really feel needed or would like to see this year.  Using these, your personalized slide will be created and become an entry in the aHUS Alliance video slideshow to launch on world Rare Disease Day, 29 February 2020.

Your vision could be about pregnancy, transplants, stopping or extending treatments, switching from eculizumab to ravulizumab, meetings others affected by aHUS, seeing need for a specific aHUS topic be researched, or anything relating to this rare disease and its impact.

If you’d like, print out the “2020” vision glasses provided, decorate them, cut them out, and wear them for your photo to be entered on this project!  Don’t worry, you don’t have to wear these glasses but do feel free to be creative with your photo!

Send in:

–        Photo

–        Name and Where you are from

–        Your Rare Disease Day aHUS “20/20” vision.

 

You can email your submission to Jeff Schmidt at jeff@ahusallianceaction.org

 

Here is Jeff Schmidt’s own sample slide.

For my “20/20” vision “I would like to see all those around the world who are affected by aHUS, receive the treatment that they need.  No one should be left behind to face this terrible disease on their own.”

 

 

GLASSES:  Download templates in LARGE or SMALL sizes

 

 

We welcome everyone from our global community to join in this project. Submissions are due by the end of 2/17/2020 to allow time to put this video slideshow together, but the earlier your entry is received the better!

 

 

 

aHUS & Rare Disease Day: 2020

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