|Dear friends and families of the APS Type 1 Foundation: |
On this Rare Disease Day, we are so moved by the enthusiasm with which you all have embraced our cause over the last few weeks. Together, we far exceeded our 1,000 mile goal for APS Type 1. We’ve logged over 4300 miles, roughly the distance between Atlanta and Paris! Racers Cooper and Simon have been trading first place over the last week- let’s see who pulls out the win.
We’re happy to share that our community has raised USD $9733 so far, just a few hundred dollars short of our fundraising goal of $10K. Please click here to donate and help us make a difference today.
As we cross the finish line on Rare Disease Day, we reflect on what your care and awareness mean to those impacted by a rare disease. A disease is considered rare if it affects less than 1 in 2,000 people (or fewer than 200,000 people in the U.S, and we know of only 150+/- cases of APS Type 1 in the U.S.). However, since there are over 10,000 identified rare diseases, the number of people with these conditions is significant. There are over 300 million people living with a rare disease, which is almost equal to the population of the world’s third largest country. About 72% of rare diseases are genetic, and 70% of those start during childhood. Still, any particular disease is rare, and physicians may go their entire career without seeing an affected patient. And, without organizations like ours, patients can go their entire lives without ever meeting another patient. Oftentimes symptoms overlap with common disorders. This makes diagnosing and effectively treating rare diseases very challenging for most physicians. It is particularly difficult for patients who do not live in a major metropolitan area and lack access to newer medical technologies.
Most rare diseases do not have a cure for several reasons. First, they are understudied because less research funds are earmarked for diseases that impact fewer people. Advocacy organizations like ours that help raise additional money for research are generally small. Also, researchers must collaborate internationally to gather a group of patients large enough to study; this is a logistical challenge. Second, pharmaceutical companies are less likely to go through the expensive process of developing a drug that will not be used by many people, although there are some programs to help with this reality.
“The long-term cause of the Rare Disease Day campaign is to achieve equitable access to diagnosis, treatment, health and social care and social opportunity for people affected by a rare disease” –rarediseaseday.org
The challenges listed above mean that events like this virtual walk have an outsized impact on the rare disease community. Every step, row, kick, spike, pedal, jab, climb..… Every mile you logged made a tremendous difference to our community, including our patients, caregivers, families, clinicians and researchers. We are energized to continue our mission to break down barriers to diagnoses, treatments and cures for APS Type 1!Thank you for keeping us in your minds and hearts as our journey continues.
Please feel free to share your stories and photos about how you celebrated the Rare Disease Day by emailing us at firstname.lastname@example.org and we will be happy to share with our community.
A big hug,
APS Type 1 Foundation