Organized internationally by The European Organization (EURORDIS) for Rare Disorders and supported in the United States by the National Organization for Rare Disorders (NORD) and Global Genes, the last day of February has been designated Rare Disease day. This day is an opportunity for the rare disease community to rally together and raise awareness of rare diseases to the public and policymakers.
Across the world, individuals impacted by rare diseases are organizing and participating in events designed to inform the public of the challenges of living with a rare disease and raise funds for research and healthcare for these conditions. Anyone can get involved with Rare Diseases Day. Here in the United States there is a wide variety of events planned. There is an overview of a few of the events planned on the Rare Diseases Day US website.
Rare Diseases Day Virtual Race (Nationwide)
Hosted by Running on Air, this is a virtual 5k, 10K or half marathon race. Participants can race anytime in February, anywhere they feel comfortable: indoors, outdoors, even on a treadmill. The race benefits the National Organization of Rare Disorders (NORD) and the PCD Foundation. Runners will receive a 3-inch commemorative medal to symbolize their participation. Sign up or learn more on Active.com.
Wear That You Care Campaign (International)
The Wear That You Care® campaign through Global Genes is simple — all across the world people can participate in supporting rare and genetic disease awareness by wearing their favorite pair of jeans on Rare Disease day. If the event is planned in advance, organizers can request Blue Denim Genes Awareness Ribbons from Global Genes to swap for the ability to dress in jeans at work or school for the day. Sign up or learn more at https://globalgenes.org/wear-that-you-care/.
Rare Diseases Legislative Advocacy Events (Nationwide)
Rare diseases affect 10% of the population, which equates to considerable voting power. NORD has helped individuals across the nation to create advocacy events. These events provide individuals with the opportunity to meet face-to-face with elected officials and advocate for legislation that directly affects the rare disease community. In collaboration with the Rare Action Network, NORD is offering guides to help advocates prepare. You can learn about rare disease advocacy and find details for advocacy events in each state on their website.
Rare Disease Symposium (University of California – San Francisco)
At UCSF a symposium entitled, “Negotiating the Challenges of Therapeutics Discovery for Rare Diseases” works to bring students, academic scientists, business leaders, advocacy groups and experts together to establish a stronger community around rare diseases. The symposium encourages attendees to examine key issues in developing treatments, showcase ground-breaking research and foster collaborations. Tickets for the event can be found on RareDiseasesDay.org.
To help inspire you to get involved and highlight the struggle of rare disease patients, EURORDIS has created a video in honor of Rare Diseases Day 2017.
The amazing event that is Rare Diseases Day shines a focused beam of awareness on the purpose of ThinkGenetic. ThinkGenetic’s goal is to raise the visibility of genetic conditions and empower patients and families living with genetic conditions by providing interactive information and next steps to the general population. For those individuals looking for information regarding their genetic rare disease, ThinkGenetic is here to shed light on the condition.
We challenge you to join Think Genetic, NORD, Global Genes, and EURORDIS in making the voices of those with rare disease heard around the world.