We are a coalition of stakeholders changing the way rare diseases are addressed in Utah.

Our goal is to raise awareness amongst the general public and decision-makers regarding rare diseases and the life-long impact they have on patients’ lives.

Rare Disease Day takes place on the last day of February each year with Utah holding it as a two-day event. 

We call upon Utah’s key influencers to join together and do something remarkable – save lives. Policy makers, public authorities, industry representatives, researchers, health professionals and all those in our community who have a genuine interest in rare diseases are invited to advocate for our children and loved ones living with a rare and undiagnosed disease.

The inspiration our loved ones give us each day has led to the advancement of national plans and policies for rare diseases in countries throughout the world. Our children have been phenomenal leaders and continue to motivate our fight for a diagnosis no matter the obstacles we face during our journey together. We are merely their advocates and are honored to call them our leaders

Our objective is for the World Health Organization to recognize the last day of February as the official Rare Disease Day and to raise increasing awareness for Rare Diseases worldwide.

Even though the campaign started as a European event, it has progressively become a world phenomenon, with the USA joining in 2009, and participation in a record-breaking 84 countries around the world in 2014. We hope many more will join in 2015. Some countries have decided to raise rare disease awareness further, for example, Spain declared 2013 as the National Year for Rare Diseases.

Explore the thousands of events happening around the world that are building awareness for all our loved ones living with a rare disease and their families. If you are planning an event, register your event details on our Post your Event page to get your event listed on the site.

2017Utah RareNational Organization on Rare Diseases (NORD)

Let's Continue the Dream. Let's Fulfill our hope.

2016 marks nine consecutive, successful years of Rare Disease Day. Continuing the momentum, Rare Disease Day 2016 once again puts the focus on the daily lives of patients, families and caregivers who are Living with a Rare Disease.

  • How to find a diagnosis?
  • How to access treatments?
  • How to find appropriate expertise?
  • How to work with a team of caregivers, such as doctors or physical therapists, and other healthcare professionals and coordinate care between them?
  • How to operate special equipment?
  • How to administer treatments?
  • How to identify and access social services?
  • How to manage the economic burden of living with a rare disease?
  • How to ensure the well-being of the entire family and balance priorities?

Patient organizations become a crucial source of information, experience and resources. Day-by-day, hand-in-hand, together we present a united voice to advocate for the treatments, care, resources and services we all need. Patients, families and organizations are pivotal to the momentum of creating solutions for the daily challenges of living with a rare disease in solidarity with all stakeholders – caregivers, healthcare professionals, specialized social services, researchers, pharmaceutical companies, policy makers, and regulatory bodies.

Internationally, it is essential to send a strong message of solidarity to the countless rare disease patients and families throughout the entire world. Together, we can transform the individual experience of patients and relatives around the world into collective actions, support, advocacy and community building.

In Europe, there are many initiatives designed to improve daily life: Developing and facilitating access to diagnostics and treatments can change the day-to-day reality for someone with a rare disease.  Identifying and improving access to specialized social services for rare diseases enables families to improve the quality of daily life. RareConnect, EURORDIS’ moderated multi-language online social forum, allows people with rare diseases to break their isolation and to connect and share experiences. Please visit the Living with a rare disease section of the EURORDIS website to learn more about the daily challenges of living day-by-day, hand-in-hand with a rare disease and the ways in which patients and families are meeting these challenges.