Over the years, Pompe Disease has been gaining awareness globally which is quite a feat considering that it is a rare disease. So today we will be looking at what makes this possible.
There have been campaigns that have been spreading around which promotes the awareness of Pompe. One such campaign which I have mentioned before in my previous post is the International Pompe Day. As said in the name, this is an INTERNATIONAL event which involves many countries. In support of International Pompe Day, a few countries have took the effort to raise the issue of Pompe to either the general public or the government with the intention of providing support to the local Pompe patients. Here are some example of the events that occur in some of the countries on International Pompe Day:
In Australia, Pompe disease is not reimbursed by the government. Hence, messages regarding this issue was actually sent to the Prime Minister of Health. Information of Pompe disease such as what the disease is about and how it affect patients were published in the Australian newspapers which brought the country's attention towards Pompe disease.
In the United Kingdom, a 15-year-old girl whose sister is suffering from Pompe disease, organised a marathon cum fundraising event for International Pompe Day and even shared her family's Pompe experience with the local media.
In Hong Kong, a video about an infant named Kei Kei, a local Hong Konger who was suffering from infantile-onset Pompe disease was aired on Hong Kong's TVB channel.
There are many other countries who did the same, the above are only some of the examples.
Other than campaigns to promote Pompe, there are also organizations set up to provide support to Pompe patients. One such organization is the Acid Maltase Deficiency Association (AMDA). Acid maltase defiency is another term used to call Pompe disease. AMDA was set up to promote Pompe to the public as well as to help in funding research which are working on Pompe disease.
Another example is www.pompe.com which is set up by Genzyme Corporation. This website serves as a platform for Pompe patients to get information and advice about the disease, provides tips to caretakers of Pompe patients and even provide information for healthcare professionals. The website also allows the general public to know more about the lives of Pompe patients by showing video interviews of the patients who talks about their experiences and feelings towards coping with the disease.
As you can see, the Pompe community seems to be a very close knit and supportive community <3. Hopefully they can continue to provide support for each other and spread awareness of the disease to improve the lives of the fellow patients! :)
References:
http://www.amda-pompe.org/
http://www.worldpompe.org/index.php/news/525-resounding-success-international-pompe-day-2014
http://www.pompe.com/
Do Singapore play a part in raising the awareness of this disease??
ReplyDeleteHi Edmond thank you for your qn :) Yup Singapore does play a part in raising the awareness of this disease. The Rare Disorders Society (Singapore) (also part of the International Pompe Association) was set up with the purpose of raising awareness of rare diseases such as Pompe disease in Singapore. They also help these patients pay for their medical bills and getting them medical equipment. A Singaporean Pompe patient, Chloe Mah was also featured on local media such as The Straits Times, Lian He Zao Bao and Channel 8 to let Singaporeans know more about Pompe disease. We have previously wrote a blog entry on this topic. You can take a look at it right here ;)
Deletehttp://www.mbcpompedisease.blogspot.sg/2014/12/pompe-disease-in-singapore.html
Btw, Ur blog is awesome!! Have a lot of information that help me learn a lot on pompe disease
ReplyDeleteHehe thank you ^^
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