Last November 11th , Kamal Shah , of aHUS India ,and an affiliate of the aHUS alliance , appeared,by video,at the first meeting of the United Nations’ NGO Committee for Rare Diseases.
Kamal has been sent a photograph of his appearance, he can be seen on the TV screen in the centre , and he also received a letter of thanks from the Committee, click on Thank You Letter to read.
Kamal took the opportunity to outline his experience of living nearly 20 years with aHUS and in doing so he raised awareness of aHUS and the problems of facing access to treatment in the developing word for those with rare diseases. His membership of the aHUS alliance was also mentioned.
Kamal’s video of his statement of support can be viewed by clicking here and then clicking on the blue button above India.
More information ,about this important opportunity for global rare diseases, can be found on the United Nation’s committee’s website by clicking here
