Love is NOT Rare
Love is NOT Rare
Together, let's build a loving society
We alone cannot take care of our children forever
and Awareness on Rare Diseases
Everybody can play a part
What is yours?
"Our job is to love others without stopping to inquire whether or not they are worthy. That is not our business, and in fact, nobody's business. What we are asked to do is to love, and this love itself will render both ourselves and our neighbours worthy."
- Thomas Merton
Rare Diseases Knowledge Base
Rare disorders including those of genetic origin, are life threatening, chronically debilitating diseases which are of such low prevalence that special combined efforts are needed to address them.
If you're a parent with a child with Rare Diseases and would like to join RDSS, download this form and fill it up. You may send it to the mailing address on the form or alternatively, you could also scan the form and email it to us at email@example.com
Rare diseases are often chronic, progressive, degenerative, and often life-threatening.
Rare diseases are disabling: the quality of life of patients is often compromised by the lack or loss of autonomy.
High level of pain and suffering for the patient and his/ her family.
No existing or effective cure.
80% of rare diseases have identified genetic origins. Other rare diseases are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
Rare diseases are characterised by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease. Relatively common symptoms can hide underlying rare diseases, leading to misdiagnosis.
Lack of access to correct diagnosis
Delay in diagnosis
Lack of quality information on the disease
Lack of scientific knowledge of the disease
Heavy social consequences for patients
Lack of appropriate quality healthcare
Inequities and difficulties in access to treatment and care
Genetics is the branch of biology that studies the passing on of traits and features from parents to children. These traits are called "genetic" because they're determined by tiny structures within human cells called genes. People's genetic makeup is inherited from their parents and encoded into the genes in all their cells. It controls many different things, from gender, height, and eye colour to blood type and development of certain diseases.
While many common diseases (such as heart disease, high blood pressure, types of cancer) have some genetic (that is, inherited) components, genetic diseases are those caused by specific, identifiable elements of a person's genetic makeup.
Genetic diseases can present at any age, infancy, childhood or adulthood. It can cause common problems, for example, developmental delay and poor growth. It can also have rarer presentations such as heart or liver failure.
Many advances have been made in looking for a cure for genetic disease including gene therapy and bone marrow transplantation. However, for most cases, there is no cure. Even so, many patients with genetic diseases can lead fulfilling lives with proper management of their symptoms.
By implementing a comprehensive approach to rare diseases
By developing appropriate public health policies
By increasing international cooperation in scientific research
By gaining and sharing scientific knowledge about all rare diseases, not only the most "frequent" ones
By developing new diagnostic and therapeutic procedure
By raising public awareness
By facilitating the network of patient groups to share their experience and best practices
By supporting the most isolated patients and their parents to create new patient communities or patient groups
By providing comprehensive quality information to the rare disease community
Amino / Organic Acid Metabolic Disorders
Cell Proliferation Disorders
Heart Pulmonary Disorders
Immune Functions Disorders
Relative Metabolic Disorders
Urea Cycle Disorders
Urinary System Disorders
Some of the rare diseases that are known to have patients in Singapore for are as follows:
Antley Bixler Syndrome
Costello Syndrome (FCS)
Cornelia de Lange Syndrome (CdLS)
Maple syrup urine disease (MSUD)
Methylmalonic Acidemia (MMA)
Pyvurate Dehydronase Complex Dediciency
Spinal Muscular Atrophy (SMA)
Very long-chain acyl-CoA dehydrogenase (VLCAD)
We alone cannot take care of our children forever. But a loving society and a well-established system can. The stories of these children featured are the stories of RDSS. If you're a parent or a family member of a child with Rare Disorders, you can contact us through our website and share with us your story. Together we can increase awareness and support for our children.
If you have any other questions, feel free to drop us a message and we will get back to you as soon as possible. Thank you for visiting RDSS' site.
Alternatively, you could mail in to:
Rare Disorders Society (Singapore)
43 Hindhede Walk #07-08