Rare Disease Day is an international initiative aimed at raising awareness of rare diseases by sharing the experiences of patients and presenting groundbreaking research toward treating and, in some ...

The three main challenges in addressing rare diseases are awareness, accessibility, and affordability. Many healthcare providers are unfamiliar with rare diseases, leading to a prolonged ...

Jennifer Wound of Genzyme illustrates the power of using film in rare disease awareness campaigns by discussing Genzyme's 'Facing Fabry Together' patient video. Disease awareness campaigns ...

Local family raising awareness, spreading hope for Rare Disease Day Feb. 28 is Rare Disease Day. Rhett’s family encourage others who may be in their shoes to hold onto hope and find a community.

The goal for Parkinson is to take people out of their “siloes” and thinking creatively, and to raise awareness about rare diseases among the general public. She said: “Much of the ...

300 MILLION PEOPLE WORLDWIDE ARE LIVING WITH A RARE DISEASE. AND THIS DAY IS ALL ABOUT RAISING AWARENESS FOR THEM, THEIR FAMILIES AND CAREGIVERS. OUR JACKIE PASCALE BRINGS US THE STORY OF A TRIAD ...

Family Day and Rare Disease Awareness Day coincide on the calendar, and to me, this is an important reminder: Every family is a family, no matter how they came to be. ‘WE ARE not asking for ...

For many, diagnosis and treatment are not so accessible or easy. "There is an urgent need to spread awareness about rare diseases, most of which are genetic in origin. This will help early ...

During this milestone year, the coalition has achieved remarkable growth, participating in Rare Disease Awareness Events sponsored by partners such as the FDA and NIH, hosting a Hill Briefing ...

ORLANDO, Fla. — This last week of February marks Rare Disease Day. This day aims to raise awareness of rare diseases and improve access to treatment. For four years, now 27-year-old Tayler ...