Everyone faces difficulties in their lives at some time or another. Children with rare diseases need multiple intervention and medical support at early age in order to improve their overall growth and development.
RDSS offers the following programmes and services to the affected children and the families:
Medical Intervention Support Scheme (MIS) – Financial
MIS offers subsidy of up to $400.00 to every registered beneficiary who required different therapies, medical equipment support and out-of-pocket purchase of medical consumables.
With regular therapies such as PT, OT and SLT will definitely help the child to improve and lead a quality life. At times, funding for medical products is impossible because the patient have to purchase the products from oversea in order to save cost. Consumables for RD patients could add up to thousands of dollars and the current support available may not be enough to help.
For RDSS beneficiaries who qualified for the MIS scheme, please download the form and mail it together with the original invoices. Mode of payment for the purchases/services have to be via cash, NETS or credit card.
PFL was launched in 2011 and over the years, we have supported up to 14 beneficiaries. These are children that need medical equipment that required to be powered by AC supply at home. Children with low muscles tone usually required respiratory support at home and some machines have to be running 24 hours a day.
RDSS reimburse the families up to S$80.00 per month, depending the the numbers of medical equipment used by the child. The society carries out re-assessment on the needs of the beneficiaries every half-yearly to ensure they are well taken care at home.
For RDSS beneficiaries who qualified for the PFL scheme, please download the form and mail it to us.
Consumable Support Scheme (CSS) – Financial
CSS was launched in late 2014 to support needy children who need long term medical care at home. One of the supports we have is for children who require 24 hours monitoring at home be given free oximeter sensor. We are hoping to extend this scheme to middle income families in 2015.
Under this scheme, the consumable are donations in kind from the public. Donors can either donate the consumables directly to us or send in cheques with a note to indicate that you are supporting the CSS.
Upon receiving the donation in kind, RDSS will contact those families to make arrangement to either deliver or self-collect the consumables from us.
Home-based Learning and Therapy Support – Financial & Emotional
Art therapy was launched in 2018 and it aims to help the parents / caregivers to better understand the child (with rare disorders) better. Through art therapy we hope to explore the children’s emotions and improve self-esteem so that they will be able to cope with a physical illness or disability better. We also encourage the parents / caregivers to be involved so as to relieve their stress, improve symptoms of anxiety and depression.
In 2019, we extended to supporting the sibling(s) of the child living with rare disorders too.
World Rare Disease Day – Advocacy & Awareness
World Rare Disease Day is an annual observance held on the last day of February (February 28th or February 29th in a Leap Year) to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare and genetic diseases and their families.
In 2014, RDSS and Club Rainbow (Singapore) co-hosted “i Care for Rare” symposium in Singapore to raise the awareness on rare diseases. During this symposium, we have patients, families, friends, caregivers, scientists, physicians, researchers, health care providers and general public coming together to support the rare disease community.
Find out more here.
Rare Disorders Patient Handbook – Informational
This handbook is written for the parents of children living with rare diseases in Singapore. In this handbook, you will find the following:
Rare Disease Overview – This section introduces you to facts about rare diseases, including some of the possible causes of rare diseases, and treatment options that may be available for some rare diseases.
Patient Stories – Read the inspiring stories of our beneficiaries: Pei Shan, Vera, Issac, and Emily.
Caregiver Toolkit – Some useful tips relating to areas like parenting your child with rare disease, personal well-being and planning for your next child are shared in this sections
Useful Resources – Find the latest public and private resources in Singapore that offer emotional, medical, financial and educational support to rare disease patients and their families.
Every quarterly, RDSS will hold parent support group session so that new members will get the chance to network with other parents. The networking session will offer new parents a chance to share their difficulties and existing parents to share their experiences. RDSS will organise cell group meeting for families staying near to each other and this enabled the members to establish close support among them. Emotional support is critical to families in RDSS regardless at which phase of journey they are in now. Over the years, parents have developed friendship and supported each other.
RDSS Friendship Day – Psychosocial
Due to the heavy involvement of parents/caregivers in taking care of the children living with rare condition (our beneficiaries), siblings of our beneficiaries might feel neglected. Some of our children (siblings) often lack the opportunities to interact with the siblings due to their condition. In order to offer more support to the siblings, RDSS orgaises outings for them to know each other and we hope through the activities, the siblings can come together to support each other.
On of the outing is having fun at Laser Quest where the children spent an afternoon playing laser quest and lunch together. Other activities such as flying kites, watching movies and hiking will be organise for the siblings.
The society organises sport and recreational activities for the families in RDSS. Since 2011, we have organised for our children to attend outing such as bbq cum staycation in chalets, marathons, beach picnic, art therapy, tea party, Christmas party, family retreat on cruise and even an upcoming stay over at S.E.A Aquarium in 2105!
In 2015, RDSS held the largest event called “Christmas is Christmas” with more than 60 families attending.
The Rare Disorders Society (Singapore) is a non-profit organisation that serves children living with rare disorders. It is not funded by the Community Chest and other charities in Singapore. RDSS has been raising funds on its own to finance the various programmes and activities for the benefit of its members.
All the above programmes and services are fully funded by donations from the public and private sectors. If you are interested to make a donation and support us, please click on the link below to find out the ways to donate.