Typically occurring on the last day of February every year, Rare Disease Day helps raise awareness of rare diseases and advocate for better access to treatment, resources, and medical representation worldwide.
A Brief Background
Rare Disease Day was first organized by The European Organisation for Rare Diseases on February 29th, 2008. The organization selected the date of February 29th as it is a “rare day,” reflecting the sentiment of the cause. Since then, the observance has made its way to nations like China, Australia, Serbia, Colombia, Panama, and Taiwan. Today, Rare Disease Day is observed in over 80 countries.
In the U.S., the National Center for Advancing Translational Sciences (NCATS) and the National Institutes of Health (NIH) Clinical Center sponsor this event every year at NIH as part of this international observance. According to NIH, the goals of Rare Disease Day in the U.S. are to:
- Demonstrate the NIH commitment to helping people with rare diseases through research.
- Highlight NIH-supported rare diseases research and the development of diagnostics and treatments.
- Initiate a mutually beneficial dialogue among the rare diseases community.
- Exchange the latest rare diseases information with stakeholders to advance research and therapeutic efforts.
- Shine a spotlight on stories told by people living with a rare disease, their families, and their communities.
Those Struggling with a Rare Disease May Qualify for SSDI
NCATS studies have shown that 7,000-10,000 rare diseases have impacted 30 million people nationwide, with each respective disease affecting under 200,000 people each. Since such rare diseases are difficult to diagnose, a sufferer could go years without an accurate diagnosis for their illness. If or when diagnosed, treatment may not even be available, as less than 5% of rare diseases have a treatment approved by the FDA. This has resulted in immense stress and desperation for countless sufferers nationwide and their families. However, there may be hope for those with rare diseases through Social Security Disability Insurance (SSDI).
For millions of Americans who pay into Social Security each year, SSDI is a lifeline for those struggling with an illness that has rendered them unable to work for at least a year or will result in death. Depending on the nature and severity of each case, proving disability due to a rare disease may be difficult. Since rare diseases often do not appear in the Social Security Administration’s Blue Book of qualifying conditions for SSDI, an applicant may have to meet the criteria for another condition with the same symptoms. In addition, since a diagnosis for a rare disease can be challenging to attain, providing evidence of your illness to the SSA may present a few extra hurdles. Fortunately, the SSA’s Compassionate Allowance Program could significantly expedite the process of applying for SSDI for sufferers of recognized severe conditions. If approved for the Compassionate Allowance Program, an applicant’s processing time may be reduced from months (or even years) to weeks to accommodate their need.
Greater Northwest Disability Attorneys Who Advocate for You
The SSDI application process may be overwhelming and discouraging to an applicant suffering from a rare disease. However, hiring a Social Security Disability attorney for professional legal insight, clarification, and guidance through every step of the process is essential for your best possible chance at benefits. At Kerr Robichaux & Carroll, we will ensure that your voice is heard and you receive the help that you need – and deserve.
Are you or a loved one struggling with a rare disease? Let us help. Fill out and submit a contact form online or call our office toll-free at 503-255-9092 for a free consultation today.