About CT Rare Advocate
As a patient with a rare disease called Hereditary Angioedema with normal C1 Inhibitor (HAE nl-C1INH), and a parent of a child with Specific Antibody Deficiency (SAD), I want to help raise awareness of rare disease and provide information to help patients, caregivers, friends and advocates. While you may not meet someone with a particular rare disease, you likely know someone whose life is impacted by one.
What is a Rare Disease:
The definition of a rare disease varies by country and/or region. Here are some common definitions:
- United States: A disease is considered rare if it affects fewer than 200,000 people in the United States.
- European Union: A disease is considered rare if it affects fewer than 200,000 people in the European Union.
- World Health Organization: A disease is considered rare if it affects fewer than 1 in 2,000 people in the world.
Key facts about Rare Diseases:
- There are an estimated 10,000 rare diseases.
- It is estimated that 30 million people in the United States have a rare disease - or 1 in 10 people.
- Rare diseases are often misdiagnosed or undiagnosed.
- Roughly 70% of rare diseases lack a cure or treatment.
- If someone wanted to share information about a different rare disease every day, it would take more than 27 years to cover them all.
That last fact is why I created this website. On Rare Disease Day 2025, I set out to spread awareness of rare diseases by sharing a Rare Disease of the Day info card. My campaign began on March 1st, 2025 with posts on Bluesky. I launched the campaign on Instagram in late April. This website contains my library of Rare Disease Info Cards and other links to resources related to rare diseases and rare disease advocacy.
I hope you find this website helpful. If you have any questions or suggestions, please contact me at advocate@rarectadvocate.com.