Proclamation 5283

By the President of the United States of America A Proclamation

Epidermolysis Bullosa, or "EB," is a group of hereditary disorders in which the skin forms blisters after minimal injury or even simple pressure. Symptoms of the disease can resemble severe burns and can be very painful and debilitating. Mucous membranes of the mouth, eye, and gastrointestinal tract may be affected and lead to scarring, malnutrition, anemia, and even premature death.

As many as 25,000 to 50,000 Americans, mostly children, may suffer from LB. The disease can disable people physically because of the pain and anguish it causes, and it also places a severe financial burden on many families.

Basic research is just beginning to reveal the underlying causes of LB. New research findings and new approaches to diagnosis and treatment are needed to eliminate this affliction. The Federal government and private voluntary organizations have developed a strong and enduring partnership committed to EB research in order to reduce or eliminate the disease and its painful consequences.

The Congress, by Senate Joint Resolution 201, has designated the week of November 25 through December 1, 1984, as "National Epidermolysis Bullosa Awareness Week" and authorized and requested the President to issue a proclamation in observance of that week.

Now, Therefore, I, Ronald Reagan, President of the United States of America, do hereby proclaim the week of November 25 through December 1, 1984, as National Epidermolysis Bullosa Awareness Week. I urge the people of the United States and educational, philanthropic, scientific, medical and health care organizations and professionals to observe this week with appropriate programs, ceremonies, and activities.

In Witness Whereof, I have hereunto set my hand this twenty-sixth day of November, in the year of our Lord nineteen hundred and eighty-four, and of the Independence of the United States of America the two hundred and ninth.

RONALD REAGAN

[Filed with the Office of the Federal Register, 2:27 p.m., November 26, 1984]