We, the undersigned, wish to push our legislators in sponsoring and legalizing the Scleroderma Research and Awareness Act - Senate Bill No. 1443, 16th Congress to support persons who suffer from Scleroderma in the Philippines. The passage of this bill will help the voice of the Scleroderma Community be heard and recognized in policy-making.

The following are the reasons why we should #CareForRare diseases like Scleroderma:

To raise awareness as not enough people know what Scleroderma is or does. Scleroderma is a chronic, disabling, and often fatal autoimmune disease in which the body's soft tissues contract and harden due to collagen overproduction. It can cause damage to one or more of the body's organ systems, which includes the skin, heart, lungs, kidneys, gastrointestinal tract, and even the blood vessels. It has a female preponderance and is commonly found in ages 30-50 years old. Meanwhile, current studies have yet to find a definite cause and cure for this lifelong disease. 

Considering that the updated Philippine data regarding this disease is barely available, this reflects the lack of awareness regarding this disabling yet lifelong disease. The exact incidence of the disease in the Philippines is something even we are currently unsure about, making us unaware of such disease is actually rare or not. Such lack of awareness translates into a lack of programs, resources, and opportunities that should have been available to the Filipino scleroderma patients that are actually there yet we are currently “unaware” of.

To provide better treatment options for patients with Scleroderma. Scleroderma has no cure. The treatment focuses on alleviating symptoms, preventing deterioration, and managing its complications. However, most of the drugs given are used as off-label medications. This means that most drugs have not yet been given FDA approval for the treatment of scleroderma. Supporting research regarding scleroderma can provide a better understanding of the etiology of this disease. Thus, paving the way for the development of more effective treatment options. 

To provide equal access to quality healthcare. The scleroderma act should be passed as this would allow for prompt diagnosis of people with the disease and will go in line with the purpose of the recently passed Universal Health Care, which will allow people suffering scleroderma to easily access quality healthcare.

Join us in urging our legislators to enact a law that cares for rare diseases like Scleroderma. Sign the petition with us!

#CareForRare #SclerodermaAwarenessPhilippines

PDF of Senate Bill 1443: http://legacy.senate.gov.ph/lisdata/1754014775!.pdf

Scleroderma Awareness Philippines Facebook Page: https://www.facebook.com/Scleroderma.Awareness.Phils