Applying for Social Security Disability Benefits for a Rare Disease
Are you considering applying for Social Security Disability benefits for a rare disease, but are concerned about the lack of awareness for your condition?
My name is Kaitlin Wildoner, and I’m an attorney who helps disabled clients obtain their disability benefits as quickly as possible so they can focus on getting better.
Here are some key tips for applying for Social Security Disability benefits when there may be limited awareness about your rare condition.
1. Gather Comprehensive Medical Information
You may want to collect all relevant medical records, test results, imaging scans, and detailed treatment history related to your rare disease and your specific condition. This might include:
- Diagnostic tests and criteria used to identify your condition
- Detailed symptom logs and how they impact your daily functioning
- Treatment plans and their effectiveness
- Statements from specialists familiar with your rare disease
The more thorough your medical evidence, the stronger your application will likely be—especially for a condition that may not be well-known.
2. Educate the Social Security Administration
You can also try to educate the Social Security Administration about your rare disease. Here’s how:
- Include medical literature or research about your condition with your application
- Ask your doctor to write a detailed letter explaining:
- The nature of your condition
- Its typical progression
- How it specifically impacts your ability to work
3. Focus on How the Condition Limits Your Functioning
Even if your rare disease isn’t listed in the Social Security Administration’s Blue Book, you may still qualify based on how it impacts your functional capacity.
Be sure to clearly describe how your symptoms affect your capacity to perform work-related tasks. And remember, this may be for all work, not just your past work.
- Provide specific examples of the limitations you face in your daily activities
- If possible, ask your doctor to complete a Residual Functional Capacity (RFC) form detailing your limitations
Final Thoughts
Remember: the key is always to provide clear, comprehensive documentation of how your condition prevents you from engaging in substantial gainful activity—regardless of how well-known the condition may be.
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