RareD-info-my

There are very little information on the rare diseases that affects Malaysians. My organisation works mainly for those diagnosed with Alagille Syndrome and Biliary Atresia. Without early diagnosis, it is fatal. Many babies have passed on as the families did not receive adequate information and assistance in time. These diseases affect the liver and late diagnosis or even for babies that have undergone surgery as early as 30 days old, can cause liver failure in which the only solution is liver transplant. Until 4 years ago, pediatric liver transplant was not performed by surgeons in Malaysia and many had to go to other countries especially India or China for the life-saving surgery. 

The expertise in Malaysia remains very concentrated to less than 5 hospitals in Malaysia. 

We are seeking to develop an app that will provide information that enables parents to understand the disease. We also want to include information on other types or rare diseases as these helps saves lives. The information will assist the parents to know where to seek treatment and go for surgery, even if the babies are few months old. The information will also be translated to local languages as this is one of the biggest issue faced. That the parents of those not fluent in English does not know how to gather the right information from international sources.

The platform also enables the parents who want psychosocial support and other forms of aid such as finding out how to care for their babies at home, where to find the right formulas and medications that are in limited supply. There can also access where to rent feeding tubes and machines.

The app also enables us to collect data of the number of children diagnosed year by year, demographics and other data based on the type of disease diagnosed. This will enable us to provide assistance and to advocate for better pediatric healthcare. It is pertinent to address the mental health of parents and children who grow up with the disease.

We will also use this information to get the support of the government especially the Ministry of Health and other non-profit organisations for a more holistic approach.

We will develop a mobile app that contains information of the rare diseases and how it's diagnosed. It will have information such as where to best seek treatment in Malaysia. If needed, where to seek treatment in other countries. 

It will also have information such as how to seek assistance and aid. How much the treatment usually costs in government facilities and in private sectors. It will enable parents and those diagnosed with the disease to connect with peers and access to psychosocial support.

The will be a platform for people to connect and for others to put in their stories.

We will work with parents of children born with rare diseases and older children that have been diagnosed with rare diseases in Malaysia. The parents especially mothers of newly diagnosed children are in very vulnerable state, mentally and emotionally. They are prone to depression and lack the channels the seek well-informed accurate data. The data will also be translated to local languages for those who can't understand English and in very rural parts of Malaysia.

We want to stop early deaths of children who could otherwise have been saved. For older children, they will have access to information on understanding the disease that they have. They can be better equip to take care of themselves, with information on the right types of nutrition, where to get them, how different foods affect them, ability to play sports and other questions on their quality of life.

We have been working with the non-profit sector for years including for the HIV/AIDS, drug users and low income rural communities that lack access to clean water and electricity. 

The people who are going to develop this app have children who have been diagnosed with rare diseases and have been providing support to other parents of children with rare diseases. We have also connected with children born with rare diseases and have an understanding of the journey that they are on.

We will gather input from the current people we work with, parents of children diagnosed with rare diseases and children living with these diseases before working on the app. We will also gather input from pediatricians locally and international; from the Ministry of Health and other medical associations.

This will enable us to create an app that will be educational and provide much needed support. This app is beneficial even to those that are not parents but those that want to contribute to the betterment of the people with rare diseases.

This will be a totally new information database on rare diseases in Malaysia. There is very little information and expertise. We want to connect to international experts and provide accurate information and not 3rd-hand information to the beneficiaries of the project. It is also important that it's translated to local language.

The beneficiaries will have access to support and advise.

We currently do not have the finances to develop the app nor to do testing. The app has to ensure personal information are protected, have to use KYC, UI/UX testing. We have a team of IT developers that we can engaged with for this purpose.

The Challenge has give us advise of the best way to develop the app that is easy to use, simple to navigate and does not lag.

It is definitely life changing for people to have this information in Malaysian local languages. It will save many children's lives and provide holistic care. 

Healthcare in Malaysia has many underdeveloped areas. Mental health issues have not been addressed for the people. It's mainly through peer support and sometimes the information shared is not fully accurate.

This is also very important to understand the landscape of this issue in Malaysia which is important in advocating for better pediatric healthcare. 

The full impact if better quality of life for people living with rare diseases.

This information gathered from here will be used to create awareness of the diseases and reduce the stigma surrounding it. 

Impact goals:

1. Accurate information for people with rare diseases on places to seek treatment, nutrition, other types of healthcare that they is not directly related to the disease but that they should be aware of, psychosocial support.

2. Information for parents/ caregivers on the diseases, getting the emotional support, how to source for financial aid, being able to reach out before reaching a mental breakdown/ depression.

3. Getting full accurate data of the rare diseases diagnosed in Malaysia.

4. Getting input from local and international professionals working in this area.

5. Advocating for better pediatric healthcare in Malaysia.

1. Number of people registered.

2. Number of dialogues held with Ministry of Health and other medical board.

3. Number of healthcare professionals and counsellors that contribute to the program.

4. Mortality rate reduced.

The solution is to provide valuable life-saving information for people with rare diseases and support for parents/ caregivers.

We will have the data required for us and health professionals to understand the issues better. This will help provide better healthcare system in future.

We would need to continually promote this platform to ensure it's being used well and provides value to the quality of life for the beneficiaries. We also need to ensure the system continually works without bugs and ensure confidentiality of personal information.

We received grants for donors, donations from individuals. We also do provide paid training services.

The organisation is fairly new and have been able to sustain our activities, though on a small scale. We aim to enhance our programmes and get support from donor organisations.