Advocacy

Awareness & Fund Raising via #raredisease100kmchallenge

by MALAYSIAN RARE DISORDERS SOCIETY

Header raredisease100kmchallenge banner

MYR 1,528.28

Raised of MYR 60,200.00 target.


8

3%

23 Days

Donors

Funded

Left


THE CAMPAIGN:

•The #raredisease100kmchallenge campaign is an initiative to increase public awareness on rare diseases (RD) and to raise funds for the Malaysian Rare Disorders Society (MRDS). 

•The #raredisease100kmchallenge includes activities like walking, running, jogging, swimming, hiking, skating, cycling or any physical activities where participants are to clock 100km or equivalent. The challenge can be done within 10 weeks, individually or in a group, at any time and anywhere around the globe.

•Each participant is to post his/her #raredisease100kmchallenge photos with MRDS donation links, https://www.givinghub.asia/campaigns/awareness-fund-raising-via-raredisease100kmchallenge on social media whilst tagging MRDS social media platforms. 

•To join the challenge, scan the QR code on the poster or copy this link to access the registration google form: https://forms.gle/mPNosdcY7HNgeqE86

To register for the #raredisease100kmchallenge: https://forms.gle/mPNosdcY7HNgeqE86

 

THE PROBLEM


Lack of awareness on rare diseases and depleting funds are some of the key challenges faced by the rare disease (RD) community and MRDS respectively.

  • Current lack of rare disease awareness impairs RD community timely access to medicines, health services, education and employment. 
  • Depleting MRDS funds post Covid-19 pandemic has constrained MRDS in implementing programs & projects which could empower the rare disease community further. MRDS is run by one paid administrative officer and a group of volunteers who are either RD individuals or parents with RD children

THE SOLUTION


With increased public awareness, couple with strategic marketing and promotion, the campaign is also to raise funds for MRDS to hire a Project Manager on 1-year contract basis to implement the following empowerment programs/projects:

  • Nationwide outreach campaign, Establishment of regional RD leadership & Rare Disease Registry (RaDR)
  • Enhancement of RD Advocacy via youth empowerment platforms (WAUlah, Rare Catalogue and Art By The Rare Team)

THE IMPACT


•In the absence of a national RD registry in Malaysia, about a million of the country’s total population are expected to be affected by rare diseases; this estimate is based on the global statistic which indicates 3% to 5% of a country's population is to be affected with rare diseases. However, it is estimated that only about 20,000 rare disease patients have been identified. This means, many more rare disease families are expected to be at large and unidentified.

•Increased MRDS membership nationwide and establishment of regional RD centers:

  • Northern Region (Perlis, Kedah, Pulau Pinang, Perak)
  • South Region (Melaka, Johor)
  • Central Region (Kuala Lumpur, Putrajaya, Selangor, Seremban)
  • East Coast (Kelantan, Terengganu, Pahang)
  • Sabah
  • Sarawak

•The enhancement of RD Youth platforms (Rare Catalogue, WAUlahh, Art by the Rare Team)

 

Goal Breakdown

Goal 1 - Nationwide Outreach Program. Amount Needed: MYR11,000.00

Goal 2 - Youth Empowerment Program 1 year. Amount Needed: MYR15,600.00

Goal 3 - Project Manager Salary, Wages, Benefit 1 year. Amount Needed: MYR33,600.00

Support & Contribute Now
5-APR-2023

Thank You to all 75 rare disease advocates! All of your commitment  to clock 100km within 10 weeks, as part of creating public awareness on rare diseases whilst raising fund for MRDS operation and  program funds, are  very much appreciated! 


15-OCT-2022

Do check out MRDS social media platforms on posting of participants who are currently doing the #raredisease100kmchallenge!

 



MYR 1,528.28

Raised of MYR 60,200.00 target.


8

3%

-

Donors

Funded

Left



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Donors


Amount Donated

MYR 26.63

02/02/2023
Anonymous Donor

Amount Donated

MYR 319.50

02/01/2023
Anonymous Donor

Amount Donated

MYR 10.65

28/12/2022
Anonymous Donor

Amount Donated

MYR 319.50

01/12/2022
Lizanyan

Amount Donated

MYR 53.25

27/10/2022
Anonymous Donor

About the Organization/Project behind this Campaign

MALAYSIAN RARE DISORDERS SOCIETY


  • We are about RARE disorders. A rare disorder (RD) is a medical condition that affects only a few people in the population and usually has genetic origins. Malaysia defines a rare disease as one which has prevalence of 1 in 4000 births. Examples from the 474 different rare disease types recorded in Malaysia include Osteogenesis Imperfecta (brittle bones disease), Duchenne Muscular Dystrophy, Cri Du Chat, Cornelia de Lange Syndrome and Treacher Collins Syndrome.
  • We are about establishment of RD & Orphan Drug Policies/Acts. We are working with various stakeholders to deliver  long term value for the RD Community by championing full recognition of rights. MRDS President sits in two sub-committees (Patient Advocacy & Medical Intervention) of the National Rare Disease Committee (Jawatankuasa Penyakit Jarang Jumpa Kebangsaan, Kementerian Kesihatan Malaysia).
  • We are about maintaining a strong RD network in Malaysia. We align, collaborate and unite with other rare diseases organizations & groups and various stakeholders in Malaysia to achieve equitable access to medicines, health services, education and employment for the RD community. 
  • We are about raising community awareness. We work with various electronic & print media to educate the public about rare diseases, use our social media platforms (Facebook & Instagram) to highlight patient stories and organization initiatives, hold annual events to celebrate World Rare Disorder Day (WRDD), held regional & international conferences whilst networking with various stakeholders and we published ten patient stories in our first book, “Rare Journey of Love”.
  • We are about RD families support. We welcome new members via quarterly onboarding, we link families of the same RD type via chat groups to make daily caring easier, we link families with health professionals and health services as needed, we inform families of available financial assistance and we hold annual family outing with healthy activities.
  • We are about RD Youth empowerment.We conduct programs to empower RD youth, we work with RD youth on various empowerment platforms i.e., WAUlahh, Rare Catalogue and Art by the Rare Team (ART), we support RD Youth endeavors and businesses and we continuously look for opportunities for them to lead independent lives;.