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Let’s Recognize Rare Disease Day Every Year!

Send a letter to your US Governor asking them to declare the last day of February each year as Rare Disease Day! You can get your state’s Governor information HERE.

Feel free to use the following content to get your started!

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Date

Governor Name
c/o Address
City, ST 00000

Dear Governor _____,

We are writing to ask you to declare that the last day in February will be observed on an ongoing basis as Rare Disease Day in our state each year. On that day, millions of people around the world observe Rare Disease Day as a way of raising awareness of these diseases, which affect nearly 30 million Americans, and the special challenges encountered by patients and their families.

Thousands of our fellow residents join in this annual observance. Your pronouncement of the day as a recognized event in the state would be greatly appreciated by patients and caregivers, as well as medical professionals, researchers, public health officials, educators, social workers and others serving the rare disease community.

Rare diseases are those that affect fewer than 200,000 Americans, and there are nearly 7,000 such diseases affecting nearly 30 million Americans, according to the National Institutes of Health (NIH).

Rare Disease Day was observed for the first time in the United States in 2009 and was a great success. The observance was supported by entities such as the National Institutes of Health, Food and Drug Administration, and Social Security Administration, as well as many patient organizations and state and local agencies.

We respectfully ask you to consider designating the last day of February Rare Disease Day in our state on the basis that:

• Thousands of residents of our state are affected by rare diseases, as patients, friends and family, caregivers, physicians and other medical professionals, providers of social services, and researchers seeking to develop safe, effective treatments
• Many rare diseases are serious or even life-threatening
• Most rare diseases have no treatment
• About half of the people affected by rare diseases in the U.S. are children since many rare diseases are genetic
• Research on rare diseases is important because it often adds significantly to the general understanding of more common diseases

People with rare diseases experience certain challenges that occur as a result of the fact that their diseases are rare. These include:

• Difficulty in obtaining a timely, accurate diagnosis
• Limited treatment options
• Difficulty in finding physicians or treatment centers with needed expertise
• Treatments that are generally more expensive than those for common diseases
• Reimbursement issues related to private insurance, Medicare and Medicaid
• A sense of isolation and hopelessness

Rare disorders affect the entire family of an individual patient. Caregivers endure ongoing stress and isolation managing the medical and financial issues that arise. When there is delay in the diagnosis of a rare genetic disorder, siblings may be born with the same condition. When a rare genetic disorder is diagnosed during adulthood, other family members may need to be informed that they may also be at risk…and this may lead to difficult decisions regarding genetic testing, if such testing is an option.

On the basis of all of the above, we hope you will join other governors around the nation in declaring the last day in the month of February to be observed each year as Rare Disease Day in the state.

With best regards,

Your Name