RARE Skydive 2023
Symbolizes the bravery, strength, trust, and hope of children with rare disease
Did you know about Rare Diseases?
An estimated 300 million people around the world are living with a fate they simply can’t change. 75% of them are children. Of which, 30% of them may die before they’re 5 years old, with no chance of experiencing school life, friendship with peers or live any semblance of normality that most of us have taken for granted.
Out of over 7000 Rare Diseases known, no cure exists. Less than 10% of these diseases come with a chance of treatment to manage conditions, but they come with critical problems too: treatments are not easily available in many countries and they are prohibitively expensive.
The lack of awareness on Rare Diseases is apparent. Many would only hear of it when they have a child who’s diagnosed with this condition, which is often too late. Delayed diagnosis and inaccessibility to timely treatment further exacerbate the issue, causing damage to quality of life. In some cases, even the life of the child may be at stake.
It’s about time that Rare Diseases got the attention and awareness it deserves, among the public and especially among medical professionals and policymakers.
For decades, parents of children with Rare Diseases, NGOs and various support groups have been championing this cause tirelessly by highlighting its many challenges and seeking support for their needs. Considering the truth that Rare Diseases are here to stay, the least they could expect is some support and compassion.
Steps to Bring Real Change
Share real stories that make positive impacts
Children / people with Rare Diseases demonstrate courage and an incredible will to survive. Despite their challenges, they are progressing, being successful and more importantly, making widespread impact.
Inform and engage the newly elected government
And Member of Parliaments on the National Rare Disease Framework, as this program will not only benefit current, but also future generations of children with Rare Diseases.
Provide a platform to the public and corporates seeking to help the Rare Disease community
Funds will go a long way to help the purchase of life saving drugs / treatments, provide financial assistance to rare families especially those within the B40 group, and also to drive advocacy projects / activities that can further elevate awareness of these diseases.
What We Hope to Achieve
Inspire confidence and hope
Positive stories will inspire confidence and hope not only in the public and policymakers, but also in many Rare Parents out there. It must be understood that efforts and resources spent on a child with Rare Disease is well-deserved, worthwhile and beneficial to the community and nation.
More voices for betterment
Many Members of Parliament will be informed about the National Rare Disease Framework. These are individuals who can drive even more support, influence change at a greater level and can serve as voices of change to improve the future of the Rare Disease community.
Increased funding
Increased funding to cater to the immediate needs of the Rare Diseases community. This may lead to more deliberations, suggestions and actions for sustainable long-term solutions.
A positive take on children and people living with Rare Disease to be highlighted instead of usual “sob-stories”. These are not victims who need sympathy, they are unsung heroes who could use your support and understanding.
How You Can Make A Difference
Each and every one of us can do something today that can help fellow human beings with Rare Diseases to live more meaningful lives. Here are things we can all do:
Inspiration to all
Save lives by reading up, understanding and sharing information about Rare Diseases. There are plenty of empowering stories that capture the indomitable spirit of these individuals, that can serve as inspiration to all.
Publicity it deserves
Give the National Rare Disease Framework the publicity it deserves. Alert your local MPs or influencers so that they can shed light on this matter. It has remained in the backburner for far too long.
Give what you can.
Funds are useful and can have a direct impact on individuals with Rare Diseases. Keep in mind that those suffering from these diseases are not seeking sympathy, but rather your positive support and care so that they can be productive members of society too.