•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
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.
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:
•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:
•The enhancement of RD Youth platforms (Rare Catalogue, WAUlahh, Art by the Rare Team)
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
Do check out MRDS social media platforms on posting of participants who are currently doing the #raredisease100kmchallenge!
Raised of MYR 60,200.00 target.