The National Organization for Rare Disorders has announced a new, yearlong campaign to raise public awareness of rare diseases. “Do Your Share for Rare” shines a light on people living with a rare disease and provides an opportunity for them to share their story.
The National Organization for Rare Disorders (NORD) has announced a new, yearlong campaign to raise public awareness of rare diseases. “Do Your Share for Rare” shines a light on people living with a rare disease and provides an opportunity for them to share their story.
“For those living with a rare disease, the awareness, education, and support of others is paramount,” Peter L. Saltonstall, president and CEO of NORD, said in a statement. “‘Do Your Share for Rare’ is an attempt at more widespread awareness, which for someone living with a rare disease, means a great deal.”
The campaign is also aiming to prompt people to get involved in a variety of ways, including advocacy, donation, and research.
The announcement of the new campaign kicked off on February 28, which is Rare Disease Day. This year’s Rare Disease Day has the theme of research, and its slogan is “With research, possibilities are limitless.”
There are approximately 7000 known rare diseases, many of which do not have treatments, and research can help increase the understanding of these diseases and identify previously unknown ones.
“Research is key,” according to the official site of Rare Disease Day. “It brings hope to the millions of people living with a rare disease across the world and their families.”
Rare Disease Day 2017 calls upon researchers, universities, students, companies, policy makers, and clinicians to not only do more research, but also recognize the crucial role that patients play in research.
More than 80 countries and hundreds of cities participate in Rare Disease Day. Themes in past years have included patient voice (2016), living with a rare disease (2015), care (2014), solidarity (2013 and 2012), and rare diseases and health inequalities (2011).
Could On-Body Delivery of Isatuximab Bring More Competition to Anti-CD38 Myeloma Treatment?
June 6th 2025Results for IRAKLIA show noninferiority for Sanofi's on-body delivery system for isatuximab, compared with IV administration. Patients overwhelmingly preferred the hands-free delivery option.
Read More
ICS Use Tied to Fewer Exacerbations in Patients With Bronchiectasis and Elevated Blood Eosinophils
June 6th 2025Inhaled corticosteroid (ICS) use was common among patients with bronchiectasis and was associated with reduced exacerbations and hospitalizations in those with elevated blood eosinophil counts.
Read More
Real-World Data Support Luspatercept vs ESAs for Anemia in Lower-Risk MDS
June 5th 2025Patients with myelodysplastic syndrome (MDS) who received luspatercept showed greater hemoglobin gains and transfusion independence compared with erythropoiesis-stimulating agents (ESAs) in a real-world analysis.
Read More
At EHA 2025, Hematology Discussions Will Stretch Across Lifespans and Locations
June 5th 2025The 2025 European Hematology Association (EHA) Congress, convening virtually and in Milan, Italy, from June 12 to June 15, 2025, will feature a revamped program structure for the meeting’s 30th anniversary while maintaining ample opportunities to network, debate, and absorb practice-changing findings in hematology and oncology.
Read More