As we come to the end of 2019, it is appropriate to take some time to thank you for your support of the Putting Rare Diseases Patients First!(R) 501 c 3 organization. Some of you have sent us special donations, which have been gratefully received. We are very dependent on volunteers. From time to time we will do pay professionals for special services. We are now in the process of putting together a new Board of Directors. We are actively seeking several professionals, including professionals with Marketing, PR, and Social Media skills. If you are a patient with a rare diseases, or a parent of a child with a rare disease, and would like to sit on our Board of Directors, helping us to understand rare disease patient needs, please contact us. We need patient representatives from different parts of the world.
During 2019, we held two very special Webinars. The first, Webinar 008, focused on explaining how clinical trials are conducted, and why they are so important. The second, Webinar 009, was one of the best we have ever conducted. Dr. Mohrbacher from USC explained Blood Cancers, and the state of the art in the development of new treatments. This Webinar is available on the PRDPF! YouTube channel. See the link at
https://www.youtube.com/watch?v=g3pijw-02lY&t=323s
I hope you will forward this link to family members and friends who may be in need of this information.
Our Board members worked very hard during 2019. We are also grateful to our funders. We were successful in raising funding from Pfizer for our educational programs. We are very grateful for the professional manner in which our applications were funding were managed by the Pfizer Team. We are grateful to Kinsey Street Agency for their support of our outreach programs. We are thankful to Google for the award of the Google Grant, which enables us to reach patients around the world. We hope to expand our outreach in 2020 as we continue to expand our use of the Google Grant.
As we move into 2020, we are actively working on the next educational program. We are very excited about the opportunity to reach patients with Sickle Cell Disease, with information about clinical trials, and new medicine development opportunities that are currently ongoing, or in planning for Sickle Cell Disease. We are planning to run the Sickle Cell Disease event as a virtual conference.
We are actively looking for a virtual conference platform. Please contact me if you would like to donate your virtual platform for this event on the 7th of May. I can be reached at LSPEID@PRDPF.ORG.
Lorna Speid, Ph.D.
Founder and President
Putting Rare Diseases Patients First!(R)
