ACTION ALERT from Sarcoma Foundation of America:  Accelerated Approval for Rare Diseases - Call Congress Today!   In 2012, Congress passed The Food and Drug Administration Safety and Innovation Act (FDASIA).  The final version of this bill included rare disease provisions thanks in large part to the efforts of patient advocates like you!  We once again need your help to ensure that the requirements of this bill are implemented.  The Food & Drug Administration (FDA) recently issued a draft guidance on Expedited Approval Programs which they say fulfills the FDASIA mandate on Accelerated Approval for Rare Diseases.  However, the guidance does not address specific issues related to rare disease drug development as required by FDASIA.  We need to do better!  

Representative Bilirakis (R-FL) is circulating a letter in Congress calling on the FDA to fully implement FDASIA and give rare diseases improved access to Accelerated Approval.  URGENT ACTION is needed from the patient community to ask Members of Congress to sign onto the letter.  
Please CLICK HERE to call your Member of Congress.  It’s easy and only takes 5 minutes.  Just enter your address and your Congress Member’s phone number will be displayed along with a sample script you can use to ask your Member to sign onto the letter.  Access to Accelerated Approval brings down the time and cost to development treatments leading to a surge in investment and development activity for even the most rare disorders, giving more patients with rare diseases like sarcoma earlier access to safe and effective treatments. To see the Congressional Letter to FDA and to learn more about the issue, go to www.everylifefoundation.org/action-alert-accelerated-approval.  

Thank You for Taking Action!

The Texas Rare Disease Community came together on Saturday, February 28, 2015 from 1-3pm at the Texas State Capitol to rally together bringing awareness for rare diseases.

Miss Crystal Williams gave a moving speech on the steps of the Texas State Capitol advocating on behalf of Leiomyosarcoma (LMS) Cancer this year. There is always a personal touch to events such as these and Miss Williams brought us all to tears. She's an awesome young woman whom we dearly love. Miss Williams is pictured here with the  National Organization for Rare Diseases (NORD)  Ambassador, Mrs. Barbra Hernandez.



 

Rare Disease Day is February 28th each year. In 2013, Founder and Executive Director of The Cynthia Solomon Holmes Foundation, was on the steps of the Texas State Capitol advocating on behalf of rare diseases-specifically, LeioMyoSarcoma.

This year, The Cynthia Solomon Holmes Foundation will once again grace the steps of the Texas State Capitol advocating on behalf of LeioMyoSarcoma and support other rare diseases. On Saturday, February 28, 2015 at 1:00pm, our Special Guest, Miss Crystal Williams, will share her story on this rare disease. We hope to see you there.

View the Video of the Day Here (begin at 5:02)