TOGETHER, WE CAN MAKE A DIFFERENCE.

What Is Rare Disease Day?

Rare Disease Day is held on the last day of February every year to raise awareness of rare diseases. It is a day where events are held all over the world to raise awareness for an often ignored enemy: rare diseases. A rare disease, also referred to as an orphan disease, is any disorder that affects a small percentage of the population. Due to the rare prevalence of these diseases, a lack of focus on research has resulted in the struggles of many individuals and families worldwide who have severe medical conditions with no existing treatment options.

About This Campaign

On 28 February 2017, the tenth edition of Rare Disease Day will see thousands of people from all over the world come together to advocate for more research on rare diseases. In conjunction with this, the Joshua Hellmann Foundation for Orphan Disease launched this awareness cum fundraising campaign to highlight the crucial role of RESEARCH - which is what brings hope to the millions of people living with a rare disease across the world and their families, by finding solution to the problems that burden their daily lives.

Although funds dedicated to rare disease research have increased in the last few decades, the fight is far from over. Rare Disease Day 2017 is therefore an opportunity to call upon researchers, universities, students, companies, policy makers and clinicians to do more research and to make them aware of the importance of research for the rare disease community. Rare Disease Day 2017 is also an opportunity to recognise the crucial role patients play in research. 

How You Can Help

BE PART OF THE CHANGE! You can give a donation by clicking the "DONATE NOW" button above. Share this page link with friends so they too can support this cause. To find out more on how you can raise awareness on this issue: http://www.rarediseaseday.org

What Your Donations Support

Joshua Hellmann Foundation for Orphan Disease focuses on raising awareness and providing support for the diagnosis of orphan diseases among children and teenagers below the age of 19 years, who have been recommended by licensed pediatricians based in Hong Kong.

We also seek to improve the overall welfare of children with orphan diseases in Hong Kong by providing a source of information and resources related to diagnosis, care and treatment for patients and their families. In addition, we support advocacy initiatives which aim to improve the status of patients suffering from orphan diseases in Hong Kong in the longer term.

We focus on the area of diagnosis because this often presents a bottleneck to treatment. We ultimately hope to make access to accurate diagnosis equal to all children in Hong Kong.

• Orphan disease patients often face enormous difficulties in obtaining an accurate and timely diagnosis – or even basic information about their conditions – because their physicians are simply unfamiliar with their symptoms, which are often vague and confusing. Since most orphan diseases are heavily under-researched, patients and medical professionals often lack the information they need to develop appropriate options and leverage resources that are available. In the U.S., it was found that almost 1 in 3 rare disease patients received a diagnosis between 1 to 5 years after the onset of symptoms, while 1 in 7 went undiagnosed for 6 or more years.
  
• Diagnosis and possible treatment for a significant proportion of orphan diseases are not routinely available and covered by the Hospital Authority. Therefore, in order to have a professional diagnosis, funding is required. The cost of an individual diagnostic test can run into the thousands; this is simply too much for many families to afford.
  
• We also place a particular emphasis on the area of rare metabolic diseases – specifically, inborn errors of metabolism (IEM), also known as congenital or inherited metabolic diseases – as dozens of these diseases can now be detected through newborn screening. Newborn screening tests can enable a much earlier diagnosis to be performed and therefore lead to significantly better treatment options and outcomes. 
  

We hope you will join our fight against rare diseases and give a voice to those whose struggles go unheard daily. Thank you.

Please DONATE & SHARE with your friends today to help us achieve our goal of HK$100,000.