Driven by the vision of creating a support group for patients and families with genetic and incurable rare skin conditions and
building an inclusive society for them due to the visible difference that comes with the conditions, RSCS Singapore was founded
in 2017 by Clinical Associate Professor Mark Koh, Ms Sheila Lim and Professor Durreen Shahnaz.
At present, the RSCS EXCO team is 13 strong and comprises of paediatric dermatologists, nurses,
medical social workers, caregivers and patients.
Children with serious skin diseases often face hostile reactions, bullying and rejection from the public as their conditions are visible.
By building public awareness about rare skin conditions, we hope to build a more inclusive society for these children.
building an inclusive society for them due to the visible difference that comes with the conditions, RSCS Singapore was founded
in 2017 by Clinical Associate Professor Mark Koh, Ms Sheila Lim and Professor Durreen Shahnaz.
At present, the RSCS EXCO team is 13 strong and comprises of paediatric dermatologists, nurses,
medical social workers, caregivers and patients.
Children with serious skin diseases often face hostile reactions, bullying and rejection from the public as their conditions are visible.
By building public awareness about rare skin conditions, we hope to build a more inclusive society for these children.
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What are Rare Skin Conditions?
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Urticaria Pigmentosa (UP)
People with UP tend to have discoloured and itchy skin. Mast cells are a type of immune cells. In UP, there are many mast cells on the skin, which give out histamine resulting in the dark rashes or hives, especially when the skin is rubbed. This condition can be seen in all age groups but usually presents in infants or children. Sometimes the mast cells may affect the rest of the body causing allergic symptoms. Diagnosis can be confirmed with a skin biopsy. The condition is treated with antihistamines when needed and avoidance of certain histamine-containing food. |
Urticaria Pigmentosa
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Bullous Congenital Ichthyosiform Erythroderma (BCIE) or Epidermolytic Hyperkeratosis (EHK)
Children with this condition present peeling skin and blisters at birth. The skin then becomes red with erosions. Scaly, dry, red, raw and thickened skin may develop later on and there is a higher risk of skin infection as the normal skin barrier is disrupted. This is caused by an abnormality in the skin proteins (Keratin 1 and 10). Treatment is with emollients and a medication similar to Vitamin A in severe cases. |
Epidermolytic Hyperkerotosis
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Autosomal Recessive Congenital Ichthyosis (eg. Lamellar or Harlequin Ichthyosis)
Due to the mutation in genes encoding the formation of skin cells, these babies are born with a thick membrane encasing their skin. As the skin is tight, movement of the chest wall, eyes, mouth, fingers and toes may be affected. Large brown and thick scales can develop after and there may be a higher risk of skin infections. The condition is treated with emollients and a medication similar to Vitamin A. |
Epidermolytic Ichthyosis
FUNDING FOR CHILDREN UNDER 18 YEARS OLD This special fund is available for children under the age of 18 years around the world affected with ichthyosis and is intended to provide financial assistance to purchase lotions, medicine, and treatment necessities.(Click to learn more) |
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Netherton Syndrome
Those afflicted with Netherton’s Syndrome often present with red, dry, itchy and scaly skin, hair and scalp abnormalities, a compromised immune system, increased susceptibility to skin and systemic infections, dehydration, hypernatremia, temperature dysregulation, allergies, asthma and eczema. They have red, itchy, scaly skin with sparse and brittle hair and itch is a frequent problem. Due to the impaired skin barrier, they can also have problems with temperature regulation. They are also prone to poor weight gain, allergies, asthma and eczema. Teeth growth may also be affected. |
Netherton Syndrome
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Incontinentia Pigmenti
This is a genetic syndrome which can result in skin, eyes, teeth and brain abnormalities. The abnormal gene is located at the gene which encodes for gender. Females with an abnormal copy of the gene will get this condition. They can have vesicles at birth, which then become warty. The affected skin then becomes more pigmented before becoming lighter than the usual skin tone. Patients with the condition may require frequent follow-up with the dentist, ophthalmologist and neurologist. |
Incontinentia Pigmenti
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Vascular Anomalies
Are a group of blood vessel conditions that may present at birth or in the first few weeks or months of life. Sometimes they may even present after a few years. Categorized into 2 broad groups, vascular tumours and malformations range from mild to severe conditions. While most cases are isolated, some may be associated with other organ abnormalities such as the brain, spine, eye, heart and/or bones that can lead to significant physical, psychological and emotional impairment. The more complex cases will require multi-disciplinary treatment in centres specialising in the management of complex vascular anomalies. |
Vascular Anomalies
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- To create awareness of and promote the well being of those suffering from rare skin conditions,
- To promote and foster co-operation and exchange of information among those who suffer from rare skin conditions and supportive organizations,
- To stimulate and promote research in rare skin diseases with a clear purpose to find a cure and develop approaches to therapy and palliative care.
Your generous support allows us to define tomorrow’s medicine, and the opportunity to inspire, support and enable clinician-scientists to discover new cures. One of our ongoing challenges and initiatives is to raise the awareness in our communities and nationwide. Here are some ways you can make a difference.
Dear Donor,
THANK you so much for your kind donation, Every amount donated mean so dear to our society and her members so please do leave your good name in the 'remark' section of the transaction for us to give thanks to you in our 'Donors' page.
However if you wish to remain 'anonymous' we shall respect your wish and express our appreciation to you here.
"THANK YOU FOR YOUR KIND DONATION!"
THANK you so much for your kind donation, Every amount donated mean so dear to our society and her members so please do leave your good name in the 'remark' section of the transaction for us to give thanks to you in our 'Donors' page.
However if you wish to remain 'anonymous' we shall respect your wish and express our appreciation to you here.
"THANK YOU FOR YOUR KIND DONATION!"
For donations from Singapore, please use:
PayNow ID: T17SS0217E
For donations from/outside Singapore, please use:
Paypal Link: PayPal.Me/rscss
PayNow ID: T17SS0217E
For donations from/outside Singapore, please use:
Paypal Link: PayPal.Me/rscss
Account Name / Number / Type
Rare Skin Conditions Society (Singapore) / 04091075226 / Current
FAST Bank description / UEN number
Malayan Banking Berhad / S60FC1376L
Bank Code / SWIFT BIC
9636 / MBBESGSG
Rare Skin Conditions Society (Singapore) / 04091075226 / Current
FAST Bank description / UEN number
Malayan Banking Berhad / S60FC1376L
Bank Code / SWIFT BIC
9636 / MBBESGSG
When you purchase Rare Skin Conditions Society Merchandise, all of the proceeds go directly to Rare Skin Conditions Society support funds.
A range of merchandise is available from our exclusive collection you may choose from.
A range of merchandise is available from our exclusive collection you may choose from.
