Rare Disease Day

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.

Theme for Rare Disease Day 2019: Bridging health and social care

The theme, ‘Bridging health and social care’ guides patient organizations 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!

WHEN?  The first Rare Disease Day was celebrated in 2008 on 29 February, a ‘rare’ date that happens only once every four years. Ever since then, Rare Disease Day has taken place on the last day of February, a month known for having a ‘rare’ number of days.

WHY?  Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day imporves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those liveing with rare diseases.

 

NIH RARE DISEASE TWITTER CHAT

Prior to Rare Disease Day, on Feb. 22, 2019, NIH will host a Twitter chat on rare diseases from 1-2 p.m. ET. The chat will feature NIH Director Francis S. Collins, M.D., Ph.D., NCATS Director Christopher P. Austin, M.D., and CC CEO James K. Gilman, M.D., as well as representatives from the rare diseases advocacy community. Join in the conversation using #NIHchat and follow @ncats_nih_gov. Learn more at https://ncats.nih.gov/rdd and register at https://events-support.com/events/Rare_Disease_Day.

 

RARE DISEASE DAY HOUSTON

Saturday, February 23,  2019
The Health Museum of Houston
1515 Hermann Drive
Houston, TX 77004
9:00am – 1:00pm (CST)

Thursday, February 28, 2019
Texas Children’s Hospital
Auxillary Bridge
6621 Fannin Street
Houston, TX 77030
11:30am – 1:30pm (CST)

The 4th annual Rare Disease Day event will be held from 9AM – 1PM and will feature over 35 rare disease organizations hosting booths. Dr. Ionela Iacobas from the Vascular Anomalies Center, Texas Children’s Hospital Baylor College of Medicine will be onsite raising awareness about Hereditary Hemorrhagic Telangiectasia (HHT).  Details are available on the Houston Rare Disease Day Flyer.

 

NIH RARE DISEASE DAY EVENT

Rare diseases affect an estimated 30 million people in the United States. On Feb. 28, 2019, NIH will host an event to raise awareness about these diseases, the people they affect, and current research collaborations.

Sponsored by the National Center for Advancing Translational Sciences (NCATS) and the NIH Clinical Center (CC), Rare Disease Day at NIH will take place on February 28, 2019 from 8:30 a.m. to 4 p.m. ET in the Main Auditorium of the Natcher Conference Center in Building 45 on the NIH main campus in Bethesda, Maryland. The event will feature interactive panel discussions on collective research models for rare diseases, patient registries, rare cancer research initiatives, and “no disease left behind, no patient left behind.” New this year will be a presentation of the first ever Zebbie award for the NCATS Rare Diseases Are Not Rare! Challenge. Other highlights include posters and exhibits by rare disease groups and researchers as well as artwork, videos, networking opportunities and tours of the NIH Clinical Center.

Admission is complimentary and open to the public. In association with Global Genes®, participants are encouraged to wear their favorite pair of jeans. Be sure to follow the event on social media using #RDDNIH.

*excerpts taken from https://www.rarediseaseday.org