Touching Lives Suffering From Rare Diseases
Dailycsr.com - 06 January 2020 - Sanofi Genzyme has started two "Humanitarian Programs" whereby it is helping people suffering from five types of "lysosomal storage disorders ", in short LSDs as well as with hemophilia. In the former case enzyme deficiencies causes "rare genetic conditions" while in the latter due to a "rare genetic disorder" the patients' blood "does not clot normally".
In December 2019, Sanofi decided to share the stories of such patients who are emblems of inspirations for the employees at Sanofi present all across the globe. Sanofi aims to change the way "hemophilia care" takes place in the devloping regions of the world.
In order to deliver on the above mentioned vision, Sanofi has partnered with Sobi, the latter in an "international rare disease company". Together, the duo continues to deliver of Sanofi's pledge donating "one billion international units (IUs) of clotting factor" in a decade with "500 million IUs" to "the World Federation of Hemophilia (WFH) Humanitarian Aid Program over a period up to five years".
The shipment of the IUs began in 2015 and within four years over "16,500 " lives from forty developing countries were affected besides treating nearly "117,000 acute bleeds" and enabling more than "1,800 surgeries through the WFH".
People suffering from hemophilia could experience spontaneous bleeding or bleeding due to an injury for a "prolonged period of time". One could even experience internal bleeding which with repeated occurance may lead to other health issues. Sanofi shares two life changing stories one of Charan from India and another of Afif from Indonesia.
Here is the story of Charan as mentioned by Sanofi:
"Charan came to a treatment center in Pune, India after an accident sustained while playing with his friends left him paralyzed in all four limbs. When he arrived at the treatment center in Mumbai, he had not eaten for 48 hours and was very weak.
"Charan received corrective surgery and physiotherapy. Without an available supply of factor therapy, Charan would not have been able to receive the surgery he needed.
"Six weeks later he was able to walk again. 'The feeling is great; his life has changed,' said Dr. Reshma Roshan, Consultant Hematologist, Sahyadri Specialty Hospital, Pune, India".
In the case of Afif, Sanfi mentions:
"In Jakarta, Indonesia a predictable supply of factor therapy is allowing physicians to provide more comprehensive treatment to patients with hemophilia.
"Afif experienced extreme pain from his hemophilia, which prevented him from being able to walk to school on his own.
"'When he was in elementary school, the school was so far away from home. From when he was in first grade to fourth grade, I always gave him a piggyback ride to and from the school every day,' his mother Widaningsih explained.
"Thanks to humanitarian donations from the WFH to the hospital in Jakarta, Afif is able to receive regular care for his hemophilia and today he is able to walk to school on his own".
References:
3blmedia.com
In December 2019, Sanofi decided to share the stories of such patients who are emblems of inspirations for the employees at Sanofi present all across the globe. Sanofi aims to change the way "hemophilia care" takes place in the devloping regions of the world.
In order to deliver on the above mentioned vision, Sanofi has partnered with Sobi, the latter in an "international rare disease company". Together, the duo continues to deliver of Sanofi's pledge donating "one billion international units (IUs) of clotting factor" in a decade with "500 million IUs" to "the World Federation of Hemophilia (WFH) Humanitarian Aid Program over a period up to five years".
The shipment of the IUs began in 2015 and within four years over "16,500 " lives from forty developing countries were affected besides treating nearly "117,000 acute bleeds" and enabling more than "1,800 surgeries through the WFH".
People suffering from hemophilia could experience spontaneous bleeding or bleeding due to an injury for a "prolonged period of time". One could even experience internal bleeding which with repeated occurance may lead to other health issues. Sanofi shares two life changing stories one of Charan from India and another of Afif from Indonesia.
Here is the story of Charan as mentioned by Sanofi:
"Charan came to a treatment center in Pune, India after an accident sustained while playing with his friends left him paralyzed in all four limbs. When he arrived at the treatment center in Mumbai, he had not eaten for 48 hours and was very weak.
"Charan received corrective surgery and physiotherapy. Without an available supply of factor therapy, Charan would not have been able to receive the surgery he needed.
"Six weeks later he was able to walk again. 'The feeling is great; his life has changed,' said Dr. Reshma Roshan, Consultant Hematologist, Sahyadri Specialty Hospital, Pune, India".
In the case of Afif, Sanfi mentions:
"In Jakarta, Indonesia a predictable supply of factor therapy is allowing physicians to provide more comprehensive treatment to patients with hemophilia.
"Afif experienced extreme pain from his hemophilia, which prevented him from being able to walk to school on his own.
"'When he was in elementary school, the school was so far away from home. From when he was in first grade to fourth grade, I always gave him a piggyback ride to and from the school every day,' his mother Widaningsih explained.
"Thanks to humanitarian donations from the WFH to the hospital in Jakarta, Afif is able to receive regular care for his hemophilia and today he is able to walk to school on his own".
References:
3blmedia.com
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