Around 25 million Americans are fighting rare diseases

An attorney for Social Security may be able to assist victims

In the U.S., diseases that affect fewer than 200,000 people are considered rare diseases. According to the National Institutes of Health, thousands of these diseases exist, and they take a significant cumulative toll. An estimated 25 million Americans suffer from rare diseases. As any attorney for Social Security knows, these diseases can be highly complex and debilitating. Fortunately, some victims may qualify for Social Security Disability benefits.

Victims face unique challenges

According to the NIH, victims of rare diseases may face challenges in receiving appropriate diagnoses or medical attention. Rare disease patients and specialists are usually dispersed across the country. Additionally, large-scale or long-term studies of most rare diseases are often lacking. This can make it difficult for victims to receive effective treatment.

The NIH recently announced an expansion of the Rare Diseases Clinical Research Network. The RCDN facilitates collaboration and data sharing between researchers and advocacy groups across the country. Currently, the network includes about 2,600 researchers and 29,000 patients engaged in 91 studies. New awards of about $29 million will support two additional studies.

Despite these ongoing efforts, many victims of rare diseases may struggle to secure treatment and handle daily tasks. Fortunately, Social Security Disability benefits may be available to individuals with qualifying diseases or severe functional limitations.

SSD for rare diseases

The Social Security Administration recognizes numerous rare diseases as disabling. In some cases, a diagnosis alone can medically qualify a victim for benefits. In other cases, the SSA establishes criteria a disease must meet to be considered disabling.

As any attorney for Social Security can confirm, some rare diseases are eligible for expedited claim processing. The following SSA programs allow faster decisions for claims involving serious conditions:

• Compassionate Allowances — the CAL program identifies conditions that almost always qualify for SSD benefits. Victims only need to provide basic objective evidence to support their claims.
• Terminal illness — the TERI program expedites processing of terminal illness claims. Some illnesses automatically qualify for the program. A claim may also qualify if a doctor states the disease is terminal or if the applicant receives hospice care.
• Quick Disability Determination — with predictive computer programs, the SSA identifies claims that are likely to be approved. Claims examiners can approve QDD cases without second opinions from medical professionals.

Diseases that don’t qualify for these programs may still merit benefits. The SSA can award medical-vocational allowances to people who cannot reasonably perform gainful work. The SSA considers each applicant’s health, age, job skills and education to determine whether this is the case. As any attorney for Social Security can explain, extensive documentation is crucial for these claims, given the SSA’s rigorous standards.