RARE JOURNEYS

ANY UNANSWERED QUESTIONS?

Having unanswered questions about your health or loved one’s health can be very stressful. 

We understand you. We are here to hold your hand along this journey.

ARE YOU EXPERIENCING ANY OF THESE SCENARIO?

YOU ARE NOT ALONE

Having a rare disease doesn’t mean you are alone.

Trying to figure out rare disease symptoms, a new diagnosis and treatment options can be overwhelming physically and mentally.

Getting to know your condition can help you overcome the fear of the unknown.

GET TO KNOW YOUR CONDITION

There are a few categories of Rare Disease

Nerve Muscle Related

  • Normally experienced by male children
  • Experiencing muscle weakness once they reach 5 years old and keep deteriorating to the point of needing wheel chair.
  • Capable to achieve academic excellence.
  • There are treatments available to control the symptoms and improving the quality of life.

Chromosome Related

  • Interruption or chromosome anomaly referred to the changes in the number of chromosome or its structure.
  • Causing slow growth
  • There are treatment available such as early intervention program, physiotherapy and occupational therapy to achieve maximum capability

Bone Related

  • Brittle bone disease can cause bone fracture easily
  • Capable to achieve academic excellence.
  • Pamidronate medicine can help to slow down the bone injury.

"WHAT IF I HAVE NOT BEEN DIAGNOSED?"

It is important to get diagnosed by doctor. Referral letter from doctors can be useful for further diagnostic and possible treatment.

There are few hospitals in Malaysia that provides genetic counselling and related services.

PUSAT PERUBATAN
UNIVERSITI MALAYA

PUSAT PERUBATAN
UNIVERSITI KEBANGSAAN MALAYSIA

PUSAT PERUBATAN
UNIVERSITI SAINS MALAYSIA

HOSPITAL
KUALA LUMPUR

GET SUPPORT FROM THE COMMUNITY

Stay up to date with the latest medical discovery, how other members of the RD community lead their rare journey and available treatment.

The rare disease community can help you to get the right information about your challenge and support you need.

MRDS

Malaysian Rare Disorders Society is a voluntary organization that represents the voice of RD patients via various activities throughout the year. 

It is formed with the guidance of the Genetic Unit & Department of Medical Social Work at University

I Want To Join The Community

NGO SPECIFIC

There are few NGOs specific to particular RDs. 

Being part of the community can give you a new and positive perspective towards your rare journey

I Want To Contact RDAFM Affliates

FREQUENTLY ASKED QUESTIONS

A rare disease is a condition that affects a small number of people and is often poorly understood.

The prevalence of rare diseases varies widely, in Europe, it occurs in 1 in 2000 or less

The causes of rare diseases can be genetic, environmental, or a combination of both.

Rare diseases can be difficult to diagnose because they are not well-known or understood. In many cases, a diagnosis is made based on the patient's symptoms and medical history, as well as laboratory and imaging tests.

Treatment options for rare diseases depend on the specific condition and may include medications, surgery, or other therapies.

Some rare diseases have cures, while others may be managed with treatment but not fully cured.

Finding a specialist for a rare disease may involve seeking out a medical center or doctor who has experience in treating the condition. Patients may also want to consider joining a patient support group or consulting with a genetic counselor. In Malaysia, there are genetic clinics in University Malaya Medical Centre or Hospital Kuala Lumpur.

There are many organizations that provide support for people with rare diseases and their families, including patient advocacy groups, support groups, and financial assistance programs.

There are several ways to get involved in advocacy for rare diseases, including joining a patient advocacy group, participating in Rare Disease Day events, and contacting lawmakers to advocate for policies that support people with rare diseases.Those interested can also contact Malaysian Rare Disorders Society. Tel:019-771 4543 Email: info@mrds.org.my.

Clinical trials are research studies that evaluate new treatments for various medical conditions, including rare diseases. People who are interested in participating in a clinical trial should speak with their doctor