Global DARE Foundation

Windham,  ME 
United States
https://www.defeatadultrefsumeverywhere.org/
  • Booth: 1234

Shine a Light on Refsum Disease: Join Global DARE in Leading the Way to Early Diagnosis, Advancing Research and Improving Quality of Life

Discover how Global DARE Foundation is advancing Refsum Disease awareness and research. Refsum affects about 1 in 300 individuals with Retinitis Pigmentosa. It takes upwards of 15-20 years to be diagnosed with Refsum Disease, which is unfortunate since a specialized diet can slow vision and hearing loss and alleviate other symptoms. Learn how eye doctors play a pivotal role in early diagnosis, crucial for timely intervention. Simple diagnostic steps, like a blood test, assessment of finger and toe length, and evaluation of smell loss, can aid in early detection. Explore our efforts to advance research, including funding for a new pilot mouse model study, which holds promise for developing potential treatments. Join us in advancing early diagnosis and collaborative research on Refsum Disease, ultimately improving quality of life.