First National Pompe Awareness Day Launched in India

Jamie Ring | August 14, 2012

Anil Raina and Jamie Ring of Genzyme ask LSDSS of India President and rare disease advocate, Prasanna Shirol, about India’s first-ever national Pompe Day

The LSDSS (Lysosomal Storage Disorder Support Society), is a group that was recently formed in 2010 to promote disease awareness of LSDs in India. The group is made up of families, friends, and caregivers of patients living with lysosomal storage disorders who use their collective experiences to educate and inform others about what it means to have a rare genetic disease. Last year, the group used rare disease events such as Rare Disease Day in February, MPS Awareness Day in May, and more recently, their own India Pompe Awareness Day on June 1st to help garner media attention and national recognition for rare diseases. On this day, several families affected by Pompe joined two medical professionals to host a media day. They shared their stories with the media, which resulted in more than 10 articles about Pompe disease in Indian newspapers including one that was published by a well known magazine called “The Week."  We asked one of the founders of the LSDSS, Mr. Prasanna Shirol, to share a few of his thoughts about Pompe Day in India with the Genzyme Rare Community: 

What was your goal in hosting the June 1st Pompe Day in India?

After starting the LSDSS in India, we started doing awareness activities and especially focused on Rare Disease Day which is a National Level event. In the last three years, the number of patients in each of the disease categories has increased in India and I felt there was a need to increase awareness.

Secondly, I knew that MPS Awareness Day was observed globally on May 15th but there was no dedicated day for other LSD's. Accordingly, we decided to create a dedicated day for other diseases. We are also planning to observe Gaucher Day (11th Sept. ) and Fabry Day (12th Dec.) also. All these days are spread out throughout the year.

Please describe some of the major results from this initiative?
For the first time, a media awareness Camp was organized in Bangalore and was attended by over 30 media persons and 2 doctors who were treating Pompe patients in Bangalore. As a result, a very good local coverage on the Disease was generated.

The meeting was also attended by families of three Pompe patients and it helped create an awareness in the general public. In addition, some useful gifts and donations were given to the patients.

Is there anything you would do differently next year with your Pompe Awareness Day?

Yes, there are a number of plans for the next year. We are planning to organize a music concert by a noted singer which shall be used as an awareness and fund raising event on a larger scale.

 

For more information about this initiative, please visit the LSDSS at www.lsdss.org.  

 

 

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