Voices From The Rare Disease Community
"While These diseases might be rare, the impact on an individual and really the entire family is profound." — Maya Bloomberg, Hematology Nurse Practitioner
Rare Disease Day is a time to come together as a community and raise awareness about the challenges faced by individuals with rare diseases. It is a day to celebrate the progress we have made and advocate for better understanding, support, and research. By sharing our stories and experiences, we hope to create a more equitable future where individuals with rare diseases receive the care and attention they deserve.
Hear what those in the community have to say…
Maya Bloomberg - Hematology Nurse Practitioner
“Rare Disease Day is a crucial moment to raise awareness about conditions that affect only a small percentage of the population…These disorders bring unique challenges, from finding specialized providers, to navigating treatment, accessibility and affordability, to just coping with the emotional toll of a rare diagnosis. These individuals often face misconceptions and lack of awareness, making advocacy and education critical.”
Tamara Scriver - PK Deficiency
“I think it is a time to celebrate all of the progress that we've made in the rare disease world, and it's a time to take us out of the shadows and put us into the spotlight for all of the progress that we've made and make us mainstream.”
To learn more about Rare Disease Day and how you can get involved, head to RareDiseaseDay.org.
If you want to learn more about bleeding disorders and engage with thought-provoking discussions on the latest developments in research, treatment, and advocacy, tune in to the BloodStream Podcast available at the links below: