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.”
David - Polycythemia Vera Warrior
“To me, living with a rare disease is not just a medical journey. It's a testament to resilience and the power of community. Rare disease day, for me, is more than just a date on the calendar. It's a beacon of hope and solidarity. It's a day when our voices, which are often lost in the vast sea of mainstream health issues, rise and converge into a powerful chorus.”
Josh Bragg - Aphantasia
“My disability. I'm not even sure it qualifies as a disability. It's called aphantasia. It's only recently become something that is studied by scientists. Rare Disease Day is so important. It's an opportunity for the world to see the diversity of people who are living with various disease states.”
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.”
Nina Maria - Beta Thalassemia Major
“To me, rare disease day means recognition. It means being seen. It means bringing much needed awareness to the community.”
Dana - Polycythemia Vera
“To me, rare disease day means ownership and personal empowerment over my chronic blood disorder. Rare disease day enables myself and others to help educate the broader community so more research can be made to hopefully one day find a cure for polysythemia vera and other blood disorders under the classification of an MPN.”
Janet - Executive Director of Chess Foundation
“As a mom and sibling with a long family history of severe hemophilia A with complications. To me, rare disease day means taking a moment to honor the sacrifices and challenges our community has faced to celebrate the advancements in care.”
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: