Hi! My name is Giusiana, and I am in the process of creating a nonprofit organization! I already have my board of directors on board and multiple volunteers, we just need to cover the costs to get started! The funds we raise here will go towards legal filing fees with the state and IRS, setting up a website, and basic initial startup costs. All of our work will be done voluntarily and unpaid, funds will be exclusively used for the organization costs.
Our organization will exist to provide resources and support for rare disease patients and their families, and provide education materials for medical providers and caretakers.
As a rare disease patient myself, and my board members who also have rare diseases, we understand the importance of resources within the community. Our mission is to provide others with the resources we weren't given/weren't available to us earlier in our journey.
We aim to illuminate the unique challenges faced by those in the rare disease community by fostering understanding, education, compassion and action. We hope to help bridge the gap between patients and providers and provide resources needed for effective care.
Individually, we have made strides in advocacy, but we know we can do so much more. We envision a world where every rare story is seen, heard, and valued.
Some facts about rare diseases:
- There are over 7,000, and later research indicates as many as 10,000 rare diseases. Since most of these conditions are life threatening, this highlights the needed for new drug research and development of treatment options.
- 95% of rare diseases lack FDA approved treatments, only about 500 have treatments, leaving millions of patients without relief or hope.
- 3 in 10 rare disease patients won't live to see their 5th birthday.
- The diagnostic delay for rare diseases varies from months to decades, with the average time for accurate diagnosis being around 4 to 5 years, and often up to 10-15+ years. The key to improving survival rates, patient experience, and well-being is through earlier diagnosis. Providing education to patients and providers can shorten diagnostic delay and improve survival rates.
- Over half of all rare diseases don't have a foundation or research group.
While rare diseases are individually rare and impact small numbers of people per disease, over 300 million people worldwide live with a rare disease, that's nearly 1 in 10 Americans! Rare diseases impact more people than AIDS and cancer combined. This highlights the need for increased awareness, research, and understanding.
Life with a rare disease can be extremely lonely, because you are rare, and so few understand. We will be providing patient-to-patient conversation and support opportunities, as well as opportunities for family members and caretakers of rare patients to connect.
Please consider donating to make our mission possible, and support rare patients within our community!
-Giusiana
"If you don’t think representation matters, you’re probably well represented."
-Bernice King
(Pictured is me holding the Proclamation by the Governor of Washington proclaiming the month of May to be ehlers danlos awareness month)