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Help Sickle Cell Obtain the Rare Disease Pediatric Voucher

Help Sickle Cell Obtain the Rare Disease Pediatric Voucher

Sickle Cell Warriors!!!

We need your help!  Please read the letter below and  send your comment into the FDA. We have until February 16th to respond as a community. The deadline is coming up quick! The Pediatric Rare Disease Voucher Program was created for sickle cell disease, however, due to the new guidelines, we are now being excluded.

Remember, this is a Pediatric incentive, so when responding, you must share your pediatric experience or how beneficial it would be for children with sickle cell to get better treatment options. (The trickle down effect will help us all!).

Ready to get involved? Leave your comment to the FDA Here. Information for what to say, and how to craft your comment is below. It must be original, personable, yet still get the message across that sickle cell disease must be a part of the Rare Disease Voucher Program.

PRV websign top header

The more comments we have from the general community, the more likely the FDA will agree to include sickle cell disease back into the Pediatric Rare Disease Voucher program. The comment session has been extended to February 16th, so please, please, write your comment/letter now. Check out the sample below to give you some ideas, but this is your story, of your journey, and how important it is to you that sickle cell disease receive the voucher to fast track medical treatment options, drugs, and hopefully a universal cure! ~Tosin

Leave your comment to the FDA Here. Remember, you must talk about the benefit from a Pediatric perspective because this is a Pediatric (kids) program. Share and forward to everyone! Sample below.

Sample letter

Sample letter

 

Are you ready to leave your own comment directly to the FDA? Please Click Here to do so or go to http://www.regulations.gov/#!submitComment;D=FDA-2014-D-1461-0003

 

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Sickle Cell Warrior

Sickle Cell Warrior

Tosin is dedicated to perpetuating healthy and positive messages about sickle cell. Although sickle cell is a subject often taboo in the communities this condition is most prevalent, Tosin’s message is that sickle cell is not something to be ashamed of and you can live a rich and fulfilling life with sickle cell. Sickle cell warriors are the most amazing people in the world, with a great fortitude for compassion, willpower and strength.

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