The 12th world Rare Disease Day will be held on 28 February 2019 (Thursday), 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.
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.
What’s the 2019 theme for Rare Disease Day?
‘Bridging health and social care’ is the theme for world Rare Disease Day on 28 February 2019, and which underscores organizing care and its impact on family and patient lifestyles. Results from a Rare Barometer project, a Europe-wide survey by EURORDIS and InnovCare, were highlighted in the aptly named 2017 report Juggling Care and Daily Life: The Balancing Act of the Rare Disease Community. It found that 80% of rare disease patients reported difficulty completing basic daily tasks, with the majority of care needs coordinated by patients or family caregivers taking a ‘significant amount of time’ and 70% describing it as ‘time consuming’.
From this report: “Organising care can involve researching local services, making phone calls, accessing treatments and rehabilitation, handling administrative procedures and adapting the home or work space. As a consequence, people living with a rare disease are often off work or school. It becomes a complex and frustrating process, especially when a lack of coordination across services means having to repeat the same information over and over again. Communication between different services needs to improve so that services are delivered efficiently to meet patients’ best interests.” (Report Infographic)
Rare Disease Day 2019 Video Project – Speak up about Living with aHUS
The aHUS Alliance, an umbrella group of 30 nations with atypical HUS advocates and patient organizations, invites aHUS patients and their families to participate in an international project for Rare Disease Day 2019 to ‘show their rare’ and speak up to raise awareness about living with aHUS. No matter the nation or language, every aHUS patient experience, personal journey, and family story can bring new insight – we encourage you to share the needs and concerns, the highs and lows, the successes and the limitations that truly portray the authentic voices of atypical HUS.
Details: Here’s How
People around the world living with aHUS are encouraged to participate in a video slideshow to show others their rare life. The more entries submitted the better, since every aHUS patient journey is unique. No one’s better qualified to describe the overwhelming challenges and the victorious moments of living with aHUS better than actual patients and their supportive families.
Send us a photo, name, and where you’re from along with a short statement (up to 50 words) about something that makes you rare. Something you are proud of that you can still do even though you have a chronic rare disease. Email these to: jeff@aHUSallianceAction.org and your entry will be created for inclusion in the aHUS Alliance project for Rare Disease Day. Deadline: 18 February 2019
Wondering what to write, and send along with your photo?
*You might wish to showcase your hard-won accomplishments, despite living with a rare and often chronic disease.
*Perhaps you’d like to celebrate how modifications or accommodations have helped you reach success or sped you toward a special achievement or professional goal.
*Share an inspiring moment or activity (sports, music, dance, art, etc) or note something special related to work, school, or your lifestyle/roles. Maybe raising children is what makes you proud.
*Take a selfie as part of the 2019 #ShowYourRare campaign! Paint your face, as a participant in this continued world Rare Disease Day campaign, and add a note about your pride in overcoming the challenges of aHUS.
*For those who have lost a loved one to this disease, choose any of the above in remembrance. Let the world know that your loved may have lost their struggle with aHUS but made a difference for those still fighting their battle.
*Share any message you’d like others to know on Rare Disease Day 2019. Speak up about living with atypical HUS!
See this sample slide to inspire your own entry.
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.
2019 Campaign Info, from www.RareDiseaseDay.org
“The 12th edition of Rare Disease Day will focus on bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the world face every day.
Rare Disease Day 2019 is an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better coordinate all aspects of care for people living with a rare disease.
The theme, ‘Bridging health and social care’ guides patient organisations and all Rare Disease Day participants around the world in their advocacy activities for Rare Disease Day 2019.
In addition, and due to its success in 2018, the #ShowYourRare social media campaign continues for 2019. People around the world will paint their faces and show their rare for Rare Disease Day. Get involved!”
About Atypical HUS
Atypical Hemolytic Uremic Syndrome is a life-threatening disease characterized by the systemic formation of blood clots (TMAs) throughout the body potentially causing damage to the kidneys and other organs, with complications that may include serious or fatal events including stroke, cardiac issues, and kidney failure. It affects both adults and children and is often associated with an uncontrolled activation of the complement system, part of the body’s protective immune system.
aHUS Awareness Day is held annually each 24 September.
What are various aHUS patient groups around the world doing for Rare Disease Day?
Check the latest events & info on their websites and social media
Click HERE to Connect with a network of
aHUS Advocates in 30+ countries
Know More about Atypical HUS
aHUS Alliance Fact Sheets (released Sept 2018, 2 formats)
aHUS Alliance – RD Day IMAGES