This year marks the sixth annual Rare Disease Day. This is an international event with various organizations planning awareness-raising activities. PPMD is excited to be honoring this important day by participating in a few different panels and workshops where Duchenne will be given a moment in the spotlight:

  • Sanford Rare Disease Symposium - In commemoration of the 30 million Americans affected by nearly 7,000 rare diseases, Sanford Research is hosting its symposium to increase public awareness of rare diseases and provide information to healthcare providers and researchers. PPMD Founder and CEO Pat Furlong will share her Duchenne journey, as well as discuss the role PPMD continues to play in advancing research, advocating in Washington, and improving care.

  • Pfizer's Rare Disease Day Town Hall Meeting - Duchenne is one of only a couple of rare diseases focused on in this meeting hosted by Pfizer. PPMD is honored to have been chosen by the company to put together a panel of families to tell their stories.

  • Rare Disease Day at NIH - The NIH has been instrumental in advancing Duchenne research. PPMD is proud to represent the Duchenne community at this meeting.

  • PharmaPhorum - Siren Interactive’s founder and president, Wendy White, interviewed Pat Furlong about rare disease research in their fifth and final article coinciding with their rare disease month focus.

  • PTC Therapeutics -  PTC recognizes Rare Disease Day by launching “Living with a Rare Disorder” site. PPMD Board Member Christine Piacentino is sharing her story as part of the launch.


The Duchenne community continues to be a model for other rare diseases. The work of each foundation that makes up this incredible community, helps to not only raise awareness but recruit the brightest scientific minds to dedicate their research to ending Duchenne. Industry interest continues to grow and our voices continue to be heard throughout Washington.

 

Share Your Rare Disease Story
We hope you will take the significance of today as a moment to tell someone about Duchenne who may not know about it. Whether it’s sharing your experience with it or talking about the work PPMD is doing, let’s help grow the importance of Rare Disease Day. We have a great new video created by PPMD Board Member Catherine Collins that is an easy tool to share. Let the video explain Duchenne for you.


Today is about rare. The diagnosis that once isolated us, brings us together. We celebrate awareness, applaud interest from academics, industry, and governments, and thank the wonderful physicians who provide diagnosis and care. Together we are developing promising medicines that will change the landscape and the future of all individuals with a rare disease and give them more time to spend with the people who love and care for them.

Tell your story. Tell our story. Tell someone that they can help end Duchenne.





Will Nolan, Communications Director
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