Jackson 3 and half year old who is suffering form a rare disease, the disease produce blisters on his whole body very often, therefore his almost complete body is required to be covered with bandages.
He is suffering from a rare disease known as recessive dystrophic epidermolysis bullosa.
United we pray for Jackson and many other childrens for their wellness so that they get cured soon.
(Please Comment on this article to render your blessings to little Jackson , comment box is provided at the bottom of this article) To email this article to your friends and colleagues follow this link
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There are so many children’s affected with rare diseases one of which is neurofibromatosis, so far there is no drug available to treat this disease. There is no treatment available for neurofibromatosis, there is no drug available for treating disease neurofibromatosis to prevent abnormal growth of nervous tissue.
A drug can be developed for neurofibromatosis by developing a protein synthesis inhibitor which can block abnormal synthesis of unwanted nerofibrine protein, alternatively an antisense RNA therapy and a gene therapy could be developed to treat neurofibromatosis to correct the abnormal gene which contribute for the abnormality in the affected individuals, pharma companies and government institutions and researchers around the world should explore the possibilities to develop a drug for such disease
We should encourage universities and pharmaceutical companies and researchers and institutions to initiate and advance in research for developing drugs and medicines, therapies for rare diseases.
In the fight against rare diseases US FDA has published a booklet in a PDF to bring awareness and to encourage research and development and industry to work on rare diseases drug developments and treatments. also see orphan drugs
The World Rare Disease Day.
Today its 28 Feb 2011, this day is observed as rare disease day world wide to bring awareness about diseases and to fasten and encourage the research and drug developments.This day to very important day in the life of parents who's children are suffering from the rare diseases almost 70 % rare diseases affect infants and children’s, and about 80% of the rare diseases are genetic, there are about 250 million peoples out there worldwide which are awaiting a drug or a treatments against rare diseases.
We are so much advanced in medicine and still we are so behind in developing medicines and treatment for some of the rare diseases.
US FDA and NIH are few of the institutions in world who's efforts in the direction are encouraging the rest of the world for encouraging research for developing orphan drugs and treatments for rare diseases.
We join hand with FDA in giving away the message on the Rare Disease Day.
Here is the link to PDF letter from which you can take the PDF it is a printer friendly , take a printout of this and distribute in your company or organisation.
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