Disorder Fund Application Today – Like all rare diseases are unique, so is the patient. Patients with rare diseases have many care needs, from medical information to home care assistance. Although there are funding programs to help patients with some of these needs, more support is needed to cover the costs of these expensive drugs.
The Rare Disease Fund (RDF) is a charitable foundation that aims to provide long-term financial support to patients with rare diseases who require treatment with expensive drugs. The RDF is managed by the Health Foundation (HSF), part of the SingHealth Foundation and supported by the Ministry of Health.
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A rare disease is a disease that affects less than 1 in 2,000 patients. Many rare diseases can cause death. Most rare diseases are genetic, caused by changes in genes or chromosomes that affect the body’s ability to produce enzymes and biochemicals that the body needs to function normally.
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Rare diseases can affect people of any age, but are often diagnosed at birth or in childhood. Without treatment, most conditions are fatal. About a third of rare disease patients worldwide do not live longer than five years.
Most rare diseases have no cure. But for some, effective drugs are available to replace the missing enzymes or biochemicals. In these cases, timely treatment significantly improves the life expectancy and quality of life of patients, allowing them to live in a normal state.
Medicines are often required to be taken for the patient’s life, which is expensive. This is a financial burden for patients and their families.
Christopher has a very rare disease called Bile Acid Synthesis Disorder. Fewer than 50 cases have been reported worldwide. His condition was discovered when he was four months old when his parents discovered that a scratch on his nose and a blood transfusion left his nose and fingers dead for more than 30 hours. Christopher’s eyes and skin are yellow, and he’s gaining a little weight, putting him at the bottom of the growth chart. Not only was it painful for his parents to see their first born sick, but Christopher also saw him struggle and bruise during the blood test. Then they were told that his liver was enlarged and he had scars. The rare Christopher’s disease interferes with the production of bile acids, such as cholic acid, which help the liver to expel fats and absorb fat-soluble vitamins from the liver. the food. Without cholic acid, toxic bile acids build up and damage the liver, leading to liver failure and early liver transplantation. The medical treatment Christopher needs is at least $7,000 per month. As he requires higher doses of medication as he gets older and gains weight, the family worries daily about being able to continue paying for Christopher’s medications and his finances. later as he spent the rest of his life on medication. . Fortunately, the treatment has been effective. He is not only alive today, he is still alive. He can learn, play and grow. He can eat and drink what he wants, run around, get hurt, die, and live. Just like any other child. He has a long road ahead of him, but for Christopher and his parents, every day he lives is a blessing as they celebrate every little milestone.
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As a teenager, Zecia had Gaucher’s disease, a rare neurodegenerative disease in which her body does not produce the enzyme needed to break down certain types of fat. This fat accumulates in various organs and breaks down. Only a small number of children in Singapore have this rare disease. When Zecia was first diagnosed, her liver and spleen were very large, and as a result, her stomach had collapsed. This affected his ability to eat and his growth was poor. His bone marrow is also not working well, he has low blood pressure and low blood pressure. The father remembers how his stomach swelled when he was a child because of the disease, he could not keep his balance and kept falling. It was a difficult journey for the family. Because Gaucher disease is so rare, it can take time to make a diagnosis. The family found the disease very strange and accepted the high costs of treatment. To manage her condition, Zecia needs two weeks of enzyme replacement therapy, costing her family more than $24,000 a month. If left untreated, his liver and spleen begin to swell and affect his health and well-being. The accumulation of fat in his bone marrow and brain may cause death. With treatment, Zecia’s liver and spleen have shrunk and her stomach is no longer bloated. His bone marrow is working normally now. Now he can go to school like other children. Since the drug is expensive, a family with three children cannot afford it. Fortunately, the hospital was able to provide financial assistance to ease the family’s burden. However, Zecia will need treatment for the rest of her life. As he grew older, he gained weight and needed more medication. This means that his monthly medical bill will increase over time. His family is worried if he will be able to continue his treatment for a long time without permanent financial support. But if he doesn’t get treatment, he may not survive. Currently, Zesia is enjoying every moment of her life. According to her father, she likes to draw and do paper art and hopes to grow up to be an artist.
There are many ways to support patients with rare diseases. We hope you will consider making a donation to help our sick patients. You provide financial assistance for the purchase of expensive drugs that patients need for normal life.
To make a one-time or monthly donation, click the button below or submit a completed RDF donation form. You can set the amount you like – every donation to RDF, no matter how small, is a living gift.
Monthly donations provide RDF with an ongoing source of income and ensure an ongoing source of support for patients with rare diseases. Helping and supporting patients and their families in the fight against these diseases is important.
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The tax deduction for all direct donations has been extended to 31 December 2026. For more information, visit iras.gov.sg/taxes/other-taxes/charities/donations-tax-deductions.
If you need more information or assistance, please contact Cindy Foo at cindy.foo.w.y@ or development@ and we will get back to you.
Join us and leave a legacy with your gift. A proposed financial donation to RDF is a generous way to support patients with rare diseases as they hope for life.
The CPF LIFE scheme is a national long-term insurance scheme that protects you from running out of your retirement savings by providing monthly payments for as long as you live.
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If you receive CPF LIFE monthly payments and wish to donate some or all of them, select a monthly donation using this form and submit your completed form by post or email.
A CPF nomination allows you to specify who will receive your CPF savings and how much each nominee will receive. There are two ways to apply for CPF:
I. Online CPF Applicant: Click here and fill the online form by referring to the details below. ii. Physical CPF Enrollment: For physical enrollment, visit a CPF Service Center by reading the information below.
Insurance – If your insurance policy is no longer important to you or your loved ones, you may wish to designate RDF as a beneficiary by using your policy transfer form and filling out the information below now.
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Will – similar to the settlement of an insurance policy, it can also formalize a legacy. This means that some or all of your assets (such as stocks and shares, real estate, jewelry, cash, or personal property that you own at the time of death) are donated to the RDF if other beneficiaries are provided in your financial resources. . the desire.
Talk to legal counsel about the trial to make sure the changes you make are appropriate. We appreciate your concern for our patients and your support of RDF.
*Note: All RDF donations received are managed by SingHealth Fund (SHF), a public entity (UEN 201624016E)
We are honored to express our gratitude to the donors and partners of the Rare Disease Fund for their support. For the recipients, thank you for giving them hope
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