Rare Disease Fund

What is the Rare Disease Fund?

Just as every rare disease is unique, so is the patient. Patients with rare diseases can have a wide range of care needs, from regular medical consultations to home care support. While there are existing financial schemes available to help patients with some of these needs, more support is needed to help with the cost of their expensive medicines.

The Rare Disease Fund (RDF) is a charity fund that seeks to provide long-term financial support for patients with rare diseases requiring treatment with high cost medicines. The RDF is managed by the KKH Health Fund (KKHHF), which is part of the SingHealth Fund and supported by the Ministry of Health.

Donate Now

What exactly are Rare Diseases?

There are
more than 7,000
rare diseases globally

Symptoms begin in infancy or childhood in 50% of rare diseases

A rare disease is one which affects fewer than one in 2,000 patients. Many rare diseases are fatal. Most rare diseases are genetic, directly caused by changes in genes or chromosomes that affect the body's ability to produce enzymes or biochemicals needed for the body to function normally.

Rare diseases can affect people of all ages but they are often diagnosed at birth or during early childhood. Without treatment, most conditions can be life-threatening. About one-third of patients with rare diseases globally do not live beyond five years old.

There are no treatments available for most rare diseases. But for a few, effective medicines are available which can replace the missing enzymes or biochemicals. In such cases, with early treatment, patients' lifespans and quality of life will be greatly improved, allowing them to live relatively normal lives.

The medicines usually have to be taken for the patients' entire lives and can be very expensive. This places a heavy financial burden on the patients and their families.

of rare diseases have
genetic origins and are
present for the patient's entire life

of rare diseases can
be treated effectively.
But not the rest

Donate Now

How is the situation in Singapore like?

people are
estimated to have a
rare disease in Singapore

Approximately 700
of them
are children

What exactly are Rare Diseases?

There are
More than 7,000
rare diseases globally

Symptoms begin in
infancy or childhood in
50% of rare diseases

A rare disease is one which affects fewer than one in 2,000 patients. Many rare diseases are fatal. Most rare diseases are genetic, directly caused by changes in genes or chromosomes that affect the body's ability to produce enzymes or biochemicals needed for the body to function normally.

Rare diseases can affect people of all ages but they are often diagnosed at birth or during early childhood. Without treatment, most conditions can be life-threatening. About one-third of patients with rare diseases globally do not live beyond five years old.

of rare diseases have
genetic origins and are
present for the patient's entire life

of rare diseases can
be treated effectively.
But not the rest

There are no treatments available for most rare diseases. But for a few, effective medicines are available which can replace the missing enzymes or biochemicals. In such cases, with early treatment, patients' lifespans and quality of life will be greatly improved, allowing them to live relatively normal lives.

The medicines usually have to be taken for the patients' entire lives and can be very expensive. This places a heavy financial burden on the patients and their families.

How is the situation in Singapore like?

people are
estimated to have a rare disease in Singapore

Approximately 700
of them
are children

What is it like living with a Rare Disease?

COSTLY MEDICINES AT MORE THAN $7,000 MONTHLY

Christopher has an extremely rare condition called bile acid synthesis disorder. There are fewer than 50 reported cases around the world. His condition was discovered when he was four months old when his parents noticed that a scratch on his nose and a prick from a blood test left his nose and finger bleeding for more than 30 hours. Christopher's eyes and skin were also jaundiced, and he was slow to gain weight, leaving him at the bottom of the growth chart.

For his parents, their pain was not only in just seeing their first born unwell, but also in watching Christopher struggle and being bruised from blood test. They were told then that his liver was enlarged and had some scarring.

This rare disease Christopher has interferes with the production of bile acids such as cholic acid, which help the flow of excretion of bile from the liver and assist in the absorption of fat and fat-soluble vitamins from food. Without cholic acid, toxic bile acids will build up and damage the liver, ultimately causing it to fail, and requiring early liver transplantation.

The medicine Christopher needs costs at least S$7,000 a month. As he will require a higher dose of medicine as he grows older and gains weight, the family worries each day about their ability to continue to afford Christopher's treatment, and for his financial means in the future, as he has to be on medication for life.

Thankfully, the medicine has worked. Not only is he alive today, he is thriving. He can learn, play, and grow. He is able to eat and drink anything he wants, run around, get injured, fall sick, and recover. Just like any other child.

He has a long road ahead, but for Christopher and his parents, each day he is alive is a blessing as they celebrate every small milestone.

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FORTNIGHTLY TREATMENT FOR LIFE AT
S$24,000 A MONTH

Zecia, who is in her early teens, has Gaucher disease, a rare neurodegenerative condition where her body does not produce an enzyme to get rid of a specific type of fat. This fatty substance can then build up in various organs causing damage. Only a handful of children in Singapore have this rare ailment.

When Zecia was first diagnosed, her liver and spleen were extremely enlarged and hence her abdomen was severely distended. This affected her ability to eat and her growth was poor. Her bone marrow was also not functioning well, leading to easy bleeding and a low blood count. Her father recalled how the disease caused her stomach to become so bloated as a toddler that she could not balance well and she kept falling down.

It was a difficult journey for the family. As Gaucher disease was very rare, it took more time to arrive at a definitive diagnosis. The family found the condition highly unfamiliar and had to contend with the high cost of the treatment. To manage her condition, Zecia requires fortnightly enzyme replacement therapy for life, which costs her family more than S$24,000 a month. Without the treatment, her liver and spleen will swell progressively and affect her health and life. Further accumulation of the fatty substance in her bone marrow and brain can eventually prove fatal.

With treatment, Zecia's liver and spleen have reduced in size and her abdomen is no longer distended. Her bone marrow is now functioning normally. She is now able to attend school like any other child.

As the medicine is expensive, the family with three children is unable to afford treatment on their own. Fortunately, the hospital managed to source financial assistance for the family to reduce the burden.

However, Zecia will have to receive treatment for the rest of her life. As she grows bigger and gains weight, she will need a higher dose of medicine. That means that her monthly medical bill will grow over time. Her family worries whether she will be able to continue to receive treatment in the long term, without a stable source of financial support. But left untreated, she may not survive.

For now, Zecia is enjoying every moment of her life. Her father says she loves to draw and enjoys doing paper craft, and hopes to be an artist when she grows up.

Donate Now

MORE THAN $50,000 NEEDED EVERY MONTH FOR TWINS’ TREATMENT

Hugard and Reynar, twin brothers, are living with Mucopolysaccharidosis type VI (MPS VI), a rare genetic disorder caused by the lack of an enzyme needed to break down certain waste products in the body.

Their condition was discovered during a screening when they were just 2 years old. Children with MPS VI typically don’t show symptoms at birth, but the signs started to emerge in early childhood. For Hugard and Reynar, these included scoliosis, short stature and vision problems.

The treatment they need costs about S$56,000 a month, and this amount is expected to increase as the boys grow and gain weight. Their family faces immense financial strain, worrying about how they can provide the twins with the care they need to live fulfilling lives.

Despite their challenges, Hugard and Reynar remain brave - attending school, enjoying their favorite activities, and even jokingly calling their weekly hospital visits "needle-poking" sessions. The twins continue to thrive, showing remarkable resilience in the face of their condition.

Donate Now

What is it like living with a Rare Disease?

COSTLY MEDICINES AT MORE THAN $7,000 MONTHLY

Christopher has an extremely rare condition called bile acid synthesis disorder. There are fewer than 50 reported cases around the world. His condition was discovered when he was four months old when his parents noticed that a scratch on his nose and a prick from a blood test left his nose and finger bleeding for more than 30 hours. Christopher's eyes and skin were also jaundiced, and he was slow to gain weight, leaving him at the bottom of the growth chart.

For his parents, their pain was not only in just seeing their first born unwell, but also in watching Christopher struggle and being bruised from blood test. They were told then that his liver was enlarged and had some scarring.

This rare disease Christopher has interferes with the production of bile acids such as cholic acid, which help the flow of excretion of bile from the liver and assist in the absorption of fat and fat-soluble vitamins from food. Without cholic acid, toxic bile acids will build up and damage the liver, ultimately causing it to fail, and requiring early liver transplantation.

The medicine Christopher needs costs at least S$7,000 a month. As he will require a higher dose of medicine as he grows older and gains weight, the family worries each day about their ability to continue to afford Christopher's treatment, and for his financial means in the future, as he has to be on medication for life.

Thankfully, the medicine has worked. Not only is he alive today, he is thriving. He can learn, play, and grow. He is able to eat and drink anything he wants, run around, get injured, fall sick, and recover. Just like any other child.

He has a long road ahead, but for Christopher and his parents, each day he is alive is a blessing as they celebrate every small milestone.

Donate Now

FORTNIGHTLY TREATMENT FOR LIFE AT ABOUT S$24,000 A MONTH

Zecia, who is in her early teens, has Gaucher disease, a rare neurodegenerative condition where her body does not produce an enzyme to get rid of a specific type of fat. This fatty substance can then build up in various organs causing damage. Only a handful of children in Singapore have this rare ailment.

When Zecia was first diagnosed, her liver and spleen were extremely enlarged and hence her abdomen was severely distended. This affected her ability to eat and her growth was poor. Her bone marrow was also not functioning well, leading to easy bleeding and a low blood count. Her father recalled how the disease caused her stomach to become so bloated as a toddler that she could not balance well and she kept falling down.

It was a difficult journey for the family. As Gaucher disease was very rare, it took more time to arrive at a definitive diagnosis. The family found the condition highly unfamiliar and had to contend with the high cost of the treatment. To manage her condition, Zecia requires fortnightly enzyme replacement therapy for life, which costs her family more than S$24,000 a month. Without the treatment, her liver and spleen will swell progressively and affect her health and life. Further accumulation of the fatty substance in her bone marrow and brain can eventually prove fatal.

With treatment, Zecia's liver and spleen have reduced in size and her abdomen is no longer distended. Her bone marrow is now functioning normally. She is now able to attend school like any other child.

As the medicine is expensive, the family with three children is unable to afford treatment on their own. Fortunately, the hospital managed to source financial assistance for the family to reduce the burden.

However, Zecia will have to receive treatment for the rest of her life. As she grows bigger and gains weight, she will need a higher dose of medicine. That means that her monthly medical bill will grow over time. Her family worries whether she will be able to continue to receive treatment in the long term, without a stable source of financial support. But left untreated, she may not survive.

For now, Zecia is enjoying every moment of her life. Her father says she loves to draw and enjoys doing paper craft, and hopes to be an artist when she grows up.

MORE THAN $50,000 NEEDED EVERY MONTH FOR TWINS’ TREATMENT

Hugard and Reynar, twin brothers, are living with Mucopolysaccharidosis type VI (MPS VI), a rare genetic disorder caused by the lack of an enzyme needed to break down certain waste products in the body.

Their condition was discovered during a screening when they were just 2 years old. Children with MPS VI typically don’t show symptoms at birth, but the signs started to emerge in early childhood. For Hugard and Reynar, these included scoliosis, short stature and vision problems.

The treatment they need costs about S$56,000 a month, and this amount is expected to increase as the boys grow and gain weight. Their family faces immense financial strain, worrying about how they can provide the twins with the care they need to live fulfilling lives.

Despite their challenges, Hugard and Reynar remain brave - attending school, enjoying their favorite activities, and even jokingly calling their weekly hospital visits "needle-poking" sessions. The twins continue to thrive, showing remarkable resilience in the face of their condition.

Donate Now

How can I help?

There are many ways for you to express your support for patients with rare diseases. We hope that you will consider making a donation to help our patients in need. You will be providing financial assistance for the expensive medicines that patients need to allow them the opportunity to live a relatively normal life.

Some medicines can
cost more than
S$200,000 a year
per patient

Patients will need to carry
the financial burden of
paying for these
medicines for life

Funding support will
ease the financial burden
and the stress on patients
and their families

Click the button below or email us the completed RDF donation form to make a once-off or monthly donation. You may set any amount you are comfortable with - every donation to RDF, however small, is a life-giving gift.

Monthly gifts provide a steady source of income to the RDF and guarantee a continued source of support to patients with rare diseases. Your kind contribution will be a great source of help and support to the patients and their families as they battle these diseases.

For every dollar of public donation, the Government will match $3, boosting the impact of the fund.

Tax deduction for all eligible donations has been extended to 31 December 2026. For more information, please refer to iras.gov.sg/taxes/other-taxes/charities/donations-tax-deductions

If you require more information or assistance, please contact Cindy Foo at [email protected] or [email protected] and we’ll get in touch with you.

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LEGACY GIFTS

Make a mark, leave a legacy through your giving. A planned monetary legacy gift to the RDF is a heartwarming and sustainable way to support patients with rare diseases, as it gives them Hope for Lifetime.

There are 3 types of legacy gifts you can make:

A) CPF LIFE Payout

The CPF LIFE scheme is a national longevity insurance annuity scheme that insures you against running out of your retirement savings, by providing you with a monthly payout no matter how long you live.

If you are receiving CPF LIFE monthly payouts and would like to donate part or all of it, opt for a monthly donation using this form and send us your completed form via mail or email.

B) CPF Nomination Scheme

A CPF nomination provides you with the option to specify who will receive your CPF savings, and how much each nominee should receive. There are two ways to make your CPF nomination:

i. Online CPF Nomination: Click here and complete the online form with reference to the information provided below.

ii. Physical CPF Nomination: Please head down to any of the CPF service centres to do a physical nomination with reference to the information provided below.

C) Insurance and Wills

Insurance - Should your insurance policy cease to be essential to you or your loved ones, you may wish to nominate the RDF as a beneficiary through your policy nomination form and complete it with reference to the information provided below.

Will - Similar to an insurance policy nomination, an official bequest can also be made. This means that part, or all of your estate (e.g. any shares and stocks, property, jewellery, money or personal belongings owned at the time of one’s demise) would be donated to the RDF when all other beneficiaries have been provided for in accordance to your will.

Do approach legal advisors for will writing to ensure that changes made are legally valid. We appreciate your meaningful consideration for our patients and support to the RDF.

Information you may need:

Name: SingHealth Fund (For Rare Disease Fund)

UEN: 201624016E

*Note: All RDF donations received are managed by SingHealth Fund (SHF), an Institution of Public Character (UEN 201624016E)

Address: Rare Disease Fund
c/o Development Department (Children’s Tower, Office @Level 3)
KK Women’s and Children’s Hospital
100 Bukit Timah Road, Singapore 229899

Email address: [email protected]

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RDF Donor Wall

We are honoured to recognise the following donors and partners of the Rare Disease Fund for their support. On behalf of the beneficiaries, thank you for giving them Hope for a Lifetime.

*2023*
$1,000,000 to $4,999,999	Dato’ Sri Prof Dr Tahir
$10,000 to $99,999	Borneo Motors (Singapore) Pte Ltd Emmanuel Assembly of God KMXK Foundation Loh Guo Pei and Fu Jia Loh Par Hong & Ang Suan Rare Disorders Society (Singapore) Singapore Precision Engineering And Technology Association (SPETA) Timothy C M Chia Yong De-Rhong
$1,000 to $9,999	Akanksha Sinha Bethel Assembly of God Brandon Tey Dr Kwa Chong Teck Gan Junjie Jet Lee JR Fitness and Dance Pte Ltd KHKH Khoo Chiow Lian Kok Pei Foong Kyowa Kirin Asia Pacific Pte. Ltd. Lim Gek Huay Mohamed Tahir Nicholas Choo Kok Wi Ong Boon Kher Star Ready-Mix Pte Ltd Tan Hong Beng The Char Family Tian Yee Shin Tracy Lim Wong Shi Hao

Click the links below for:

RDF Donor Wall 2022

RDF Donor Wall 2021

RDF Donor Wall 2020

RDF Donor Wall 2019

We are grateful to everyone and we apologise if we are unable to include every individual's / company's name in time.

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Frequently Asked Questions

For Donors

WHAT IS THE RARE DISEASE FUND?

The Rare Disease Fund (RDF) is a charity fund that seeks to provide long-term financial support for patients with rare diseases requiring treatment with high cost medicines. The RDF is managed by the KKH Health Fund (KKHHF), which is part of the SingHealth Fund and supported by the Ministry of Health.

HOW DOES THE RDF SUPPORT PATIENTS?

The RDF provides long-term financial support for patients with rare diseases requiring treatment with high cost medicines. It is a last line of support for patients after other financial schemes have been exhausted.

WHO MAKES DECISIONS ABOUT THE RDF?

A voluntary RDF Committee, comprising members from the community, has been set up to approve the list of medicines covered under the RDF, assess patient applications for financial support and exercise stewardship over the Fund.

The RDF Committee is advised by a panel of local clinical specialists with experience in the treatment of rare genetic diseases, who provide expert opinion about which medicines meet the eligibility criteria for inclusion in the RDF.

For Patients

WHO ARE ELIGIBLE?

Singapore citizens seeking treatment for their rare disease with any of the medicines covered under the RDF at any Public Healthcare Institution (PHI) may apply for RDF support through the medical social workers.

Each application will be considered by the RDF Committee on a case-by-case basis, taking into consideration the financial means of families and whether other financing support is available. The level of co-payment by the patient will be commensurate with the family's means. Patients will have to meet specific clinical criteria for initial or continuing treatment with RDF medicines to qualify for financial assistance from the RDF.

WHICH MEDICINES FOR RARE DISEASES ARE COVERED BY THE RDF?

The RDF provides funding support for patients with very rare conditions who require medicines which are proven to be clinically effective and can extend a patient's lifespan, but are high cost and pose a financial burden on them. See here for details of the criteria.

Considering funds raised to date, the RDF Committee has approved the following medicines for inclusion under the RDF. These medicines are used to treat conditions that generally have symptom onset during childhood.

Condition	Medicine(s)
Primary bile acid synthesis disorder	Cholic acid
Gaucher disease (Type 1 or 3)	Imiglucerase (Cerezyme) Velaglucerase alfa (VPRIV) Taliglucerase alfa (Elelyso)
Hyperphenylalaninaemia due to tetrahydrobiopterin (BH4) deficiency	Sapropterin dihydrochloride
Pompe disease	Alglucosidase alfa (Myozyme) Avalglucosidase alfa (Nexviazyme)
Mucopolysaccharidosis type VI (MPS VI)	Galsulfase (Naglazyme)

Over time as more funds are raised, the RDF can be expanded to cover more medicines for other rare conditions.

WHAT IS THE MEDICAL CRITERIA?

Medicines treating rare diseases must meet specific criteria to be eligible for inclusion in the RDF including all of the following:

i. Medicine is registered by the Health Sciences Authority (HSA) or a reputed international regulatory authority (Food and Drug Administration (FDA, USA) and/or European Medicines Agency (EMA)) for the condition assessed (i.e. medicine has proven therapeutic modality).

ii. Medicine treats a rare but clinically defined genetic condition that is chronically debilitating or life-threatening.
a. There is acceptable evidence that the condition causes a significant reduction in either absolute or relative age-specific life expectancy or quality of life for those suffering from the condition.

iii. There is acceptable evidence that the medicine is likely to substantially extend a patient's lifespan and quality of life as a direct consequence of its use.

iv. There is no cheaper alternative option (including non-drug therapy) for the condition.

v. The medicine is not indicated for the treatment of other conditions, or if it is, the cumulative prevalence across all indications still falls within the definition of rare (1,600 patients across all indications).

vi. The annual cost of the medicine would constitute an unreasonable financial burden on the patient and/or their family or carer.

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100 Bukit Timah Road
Singapore 229899

+65 6394 2329
+65 6394 8439

[email protected]

What is the Rare Disease Fund?

What exactly are Rare Diseases?

There aremore than 7,000 rare diseases globally

Symptoms begin in infancy or childhood in 50% of rare diseases

A rare disease is one which affects fewer than one in 2,000 patients. Many rare diseases are fatal. Most rare diseases are genetic, directly caused by changes in genes or chromosomes that affect the body's ability to produce enzymes or biochemicals needed for the body to function normally.

Rare diseases can affect people of all ages but they are often diagnosed at birth or during early childhood. Without treatment, most conditions can be life-threatening. About one-third of patients with rare diseases globally do not live beyond five years old.

The medicines usually have to be taken for the patients' entire lives and can be very expensive. This places a heavy financial burden on the patients and their families.

of rare diseases have genetic origins and are present for the patient's entire life

of rare diseases can be treated effectively. But not the rest

How is the situation in Singapore like?

What exactly are Rare Diseases?

There are More than 7,000 rare diseases globally

Symptoms begin in infancy or childhood in 50% of rare diseases

A rare disease is one which affects fewer than one in 2,000 patients. Many rare diseases are fatal. Most rare diseases are genetic, directly caused by changes in genes or chromosomes that affect the body's ability to produce enzymes or biochemicals needed for the body to function normally.

Rare diseases can affect people of all ages but they are often diagnosed at birth or during early childhood. Without treatment, most conditions can be life-threatening. About one-third of patients with rare diseases globally do not live beyond five years old.

of rare diseases have genetic origins and are present for the patient's entire life

of rare diseases can be treated effectively. But not the rest

The medicines usually have to be taken for the patients' entire lives and can be very expensive. This places a heavy financial burden on the patients and their families.

How is the situation in Singapore like?

What is it like living with a Rare Disease?

For his parents, their pain was not only in just seeing their first born unwell, but also in watching Christopher struggle and being bruised from blood test. They were told then that his liver was enlarged and had some scarring.

Thankfully, the medicine has worked. Not only is he alive today, he is thriving. He can learn, play, and grow. He is able to eat and drink anything he wants, run around, get injured, fall sick, and recover. Just like any other child.

He has a long road ahead, but for Christopher and his parents, each day he is alive is a blessing as they celebrate every small milestone.

With treatment, Zecia's liver and spleen have reduced in size and her abdomen is no longer distended. Her bone marrow is now functioning normally. She is now able to attend school like any other child.

As the medicine is expensive, the family with three children is unable to afford treatment on their own. Fortunately, the hospital managed to source financial assistance for the family to reduce the burden.

For now, Zecia is enjoying every moment of her life. Her father says she loves to draw and enjoys doing paper craft, and hopes to be an artist when she grows up.

Hugard and Reynar, twin brothers, are living with Mucopolysaccharidosis type VI (MPS VI), a rare genetic disorder caused by the lack of an enzyme needed to break down certain waste products in the body.

Their condition was discovered during a screening when they were just 2 years old. Children with MPS VI typically don’t show symptoms at birth, but the signs started to emerge in early childhood. For Hugard and Reynar, these included scoliosis, short stature and vision problems.

The treatment they need costs about S$56,000 a month, and this amount is expected to increase as the boys grow and gain weight. Their family faces immense financial strain, worrying about how they can provide the twins with the care they need to live fulfilling lives.

Despite their challenges, Hugard and Reynar remain brave - attending school, enjoying their favorite activities, and even jokingly calling their weekly hospital visits "needle-poking" sessions. The twins continue to thrive, showing remarkable resilience in the face of their condition.

What is it like living with a Rare Disease?

For his parents, their pain was not only in just seeing their first born unwell, but also in watching Christopher struggle and being bruised from blood test. They were told then that his liver was enlarged and had some scarring.

Thankfully, the medicine has worked. Not only is he alive today, he is thriving. He can learn, play, and grow. He is able to eat and drink anything he wants, run around, get injured, fall sick, and recover. Just like any other child.

He has a long road ahead, but for Christopher and his parents, each day he is alive is a blessing as they celebrate every small milestone.

With treatment, Zecia's liver and spleen have reduced in size and her abdomen is no longer distended. Her bone marrow is now functioning normally. She is now able to attend school like any other child.

As the medicine is expensive, the family with three children is unable to afford treatment on their own. Fortunately, the hospital managed to source financial assistance for the family to reduce the burden.

For now, Zecia is enjoying every moment of her life. Her father says she loves to draw and enjoys doing paper craft, and hopes to be an artist when she grows up.

Hugard and Reynar, twin brothers, are living with Mucopolysaccharidosis type VI (MPS VI), a rare genetic disorder caused by the lack of an enzyme needed to break down certain waste products in the body.

Their condition was discovered during a screening when they were just 2 years old. Children with MPS VI typically don’t show symptoms at birth, but the signs started to emerge in early childhood. For Hugard and Reynar, these included scoliosis, short stature and vision problems.

The treatment they need costs about S$56,000 a month, and this amount is expected to increase as the boys grow and gain weight. Their family faces immense financial strain, worrying about how they can provide the twins with the care they need to live fulfilling lives.

Despite their challenges, Hugard and Reynar remain brave - attending school, enjoying their favorite activities, and even jokingly calling their weekly hospital visits "needle-poking" sessions. The twins continue to thrive, showing remarkable resilience in the face of their condition.

How can I help?

LEGACY GIFTS

i. Online CPF Nomination: Click here and complete the online form with reference to the information provided below.

ii. Physical CPF Nomination: Please head down to any of the CPF service centres to do a physical nomination with reference to the information provided below.

*Note: All RDF donations received are managed by SingHealth Fund (SHF), an Institution of Public Character (UEN 201624016E)

RDF Donor Wall

2023

Frequently Asked Questions

For Donors

For Patients

i. Medicine is registered by the Health Sciences Authority (HSA) or a reputed international regulatory authority (Food and Drug Administration (FDA, USA) and/or European Medicines Agency (EMA)) for the condition assessed (i.e. medicine has proven therapeutic modality).

iii. There is acceptable evidence that the medicine is likely to substantially extend a patient's lifespan and quality of life as a direct consequence of its use.

iv. There is no cheaper alternative option (including non-drug therapy) for the condition.

v. The medicine is not indicated for the treatment of other conditions, or if it is, the cumulative prevalence across all indications still falls within the definition of rare (1,600 patients across all indications).

vi. The annual cost of the medicine would constitute an unreasonable financial burden on the patient and/or their family or carer.

Without the RDF's permission, no part of the website's content or materials may be reproduced.

There are
more than 7,000
rare diseases globally

of rare diseases have
genetic origins and are
present for the patient's entire life

of rare diseases can
be treated effectively.
But not the rest

There are
More than 7,000
rare diseases globally

Symptoms begin in
infancy or childhood in
50% of rare diseases

of rare diseases have
genetic origins and are
present for the patient's entire life

of rare diseases can
be treated effectively.
But not the rest