Rare Disease Day:  Atypical HUS in 2020

 

Rare Disease Day

Looking Ahead:  What Atypical HUS Community Sees for 2020

 

29 February 2020 will mark the 13th world Rare Disease Day, an annual event that occurs the last day of each February to highlight issues important to over 350 million people globally affected by more than 6,000 rare diseases. One of those rare diseases is atypical hemolytic uremic syndrome (atypical HUS or aHUS), which affects an estimated 2 people per million.

 

Even more Rare in 2020:  It’s a Leap Year  This extra last day in the month of February 2020 falls on the 29th, a Saturday.  Happening once every 4 years it’s rare to have a 29th day in February, and underscores the rarity of rare diseases, making it a great opportunity to highlight issues and needs within the ultra-rare atypical HUS community.

 

 

What’s common for rare disease families?

There are many common concerns that affect aHUS patients regardless of nation, culture, or language such as:  the need for quick and accurate diagnosis, access to treatment and healthcare options, shared data and information among aHUS researchers worldwide, and increased physician education about atypical HUS. Issues facing rare disease patients affect not only the individual with the disease, but also include the social, financial and societal impact among family members, the workplace, the healthcare system, and many other areas. Patients and their caregivers spend large amounts of time coordinating care, and families often experience stress from the economic burdens created when living with a rare disease.  While aHUS is called by various names, there are common challenges for patients and families around the world.

Last Rare Disease Day (28 Feb 2019) the aHUS Alliance launched its aHUS Global Patients’ Research Agenda. An international project developed over 4 years, the aHUS Global Patients’ Research Agenda listed 15 central questions grouped into 5 main categories:  Causes and Precautions, Diagnosis, Treatment, Impact: Clinical/Psychological, and Impact: Socio-Economic.  Throughout 2020, the aHUS Alliance will help connect, inform, and collaborate on various efforts that will dig deeper into those topics and other key areas.

 

 

aHUS Alliance Video Project for 2020 Rare Disease Day

The last few years have seen more outreach, education, and research into the rare disease atypical HUS – yet we have a long way to go in terms of advancements to promote better aHUS patient outcomes. The aHUS Alliance is an umbrella group of groups and atypical HUS advocates in over 30 countries which amplifies the voices of patients and their families as they share insights into their lives, to include issues and challenges that affect their lives and healthcare.

We’re pleased to announce that Jeff Schmidt (aHUS Alliance, USA) has volunteered to lead another global project for Rare Disease Day 2020.

 

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? After sending in your photo and statement, a 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.

FMI & Details: 

2020 RD Day Project– Click HERE

 

 

 

 

Check out the aHUS Alliance project video for

 Rare Disease Day 2019   

Click Here

 

 

 

More about Atypical HUS

 

Atypical HUS (version 1.0)   Information & Resources about aHUS

aHUS Press Kit   

Rare Disease Day Images (created by the aHUS Alliance)

 

 

 

Resources & More About Rare Disease Day

 

The first Rare Disease Day was created by EURORDIS, and held on a ‘rare’ leap year date, February 29, 2008.  Although it started in Europe to help policy makers and the general public aware of rare diseases and their impact, Rare Disease Day has continually expanded on a worldwide state and includes wide support.  Organizations in nations around the world such as CORD (Canada), NORD (USA),  Global Genes, the Genetic Alliance, and Rare Diseases UK are a few of the many fine groups who offer rare disease materials, outreach, and resources.

 

World Rare Disease Day 2020   (EU)

 

Rare Disease Day (USA)