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  • Challenges & Recommendations
    • Challenges & Recommendations
    • Lack of Recognition and Inclusiveness
    • Lack of Awareness and Comprehensive Healthcare Provisions
    • Lack of Access to Medications
    • Lack of Protection of the Rights and Dignity of Individuals with Rare Diseases
    • Recommendations
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Blog & Media

rarediseasemalaysia
Media

Rare disease in Malaysia: Challenges and solutions

September 5, 2020
rarediseasemalaysia
Media

Care of people with rare diseases should not be compromised in the time of Covid-19

September 5, 2020
rarediseasemalaysia
Media

Caution for rare disease patients

September 5, 2020
Aisha (in wheelchair) is more attached to her father Azhar (left), who showers her with affection
Media

Parents are pillars of strength for these rare disease patients

September 5, 2020
Media

IDEAS Launches Whitepaper on Rare Disease Policy in Malaysia

September 5, 2020
Media

Sharing rare disease data across borders

September 5, 2020
Spinocerebellar Ataxia
Blog

Spinocerebellar Ataxia

March 8, 2020
Media

The Pompe Family

June 4, 2019
Mawaddah hidap penyakit jarang jumpa
Media

Mawaddah hidap penyakit jarang jumpa

June 4, 2019
Media

William Syndrome: All Q&A Answered (Malaysia)

June 4, 2019
Tulang rapuh bukan halangan
Media

Tulang rapuh bukan halangan

June 4, 2019
Penghidup wajah
Media

Penghidup wajah

June 4, 2019
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rare disease malaysia-logo-whi

Malaysia Rare Disease communities, especially the children’s, has been embroiled with many day to day challenges for a long time. This website highlights the challenges faced by them, recommended solutions, tribute to Malaysia Rare Disease warriors / heroes, recognition to Malaysia Rare Disease champions, as well collection of media coverage on Malaysia Rare Disease. Ultimately, we desire to bring together NGO’s, government officials, medical professionals, corporates, policy makers, and citizens of Malaysia as one entity to help Malaysia Rare Disease communities, especially the children’s, in best interest of their future so they too could lead near normal life like any other child in Malaysia.

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rarediseasemalaysia

Rare disease in Malaysia: Challenges and solutions

September 5, 2020
rarediseasemalaysia

Care of people with rare diseases should not be compromised in the time of Covid-19

September 5, 2020
rarediseasemalaysia

Caution for rare disease patients

September 5, 2020
Aisha (in wheelchair) is more attached to her father Azhar (left), who showers her with affection

Parents are pillars of strength for these rare disease patients

September 5, 2020

IDEAS Launches Whitepaper on Rare Disease Policy in Malaysia

September 5, 2020

Sharing rare disease data across borders

September 5, 2020
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  • About
  • Challenges & Recommendations
    • Challenges & Recommendations
    • Lack of Recognition and Inclusiveness
    • Lack of Awareness and Comprehensive Healthcare Provisions
    • Lack of Access to Medications
    • Lack of Protection of the Rights and Dignity of Individuals with Rare Diseases
    • Recommendations
  • RD Champions
  • Tribute
  • Blog & Media
  • Contact
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