SAN DIEGO, CA – 24 Jan, 2017 – San Diego, Putting Rare Diseases Patients First! announces that it has a newly created interactive website at www.prdpf.org and is encouraging patients with rare diseases and parents of children with rare diseases to submit their contact information (emails) to the site. All information will be treated in the strictest confidence, and will never be shared. This will allow them to be kept informed of upcoming Webinars, which are free.
What are Webinars?
Webinars are online seminars that allow patients to receive important information from the comfort of their homes or offices. The PRDPF! Webinars provide actionable and useful information on topics that are pertinent to patients with rare diseases, and parents of children with rare diseases. For instance, they have a need for new treatments and diagnostics. The process by which they can help to bring these to the fore is explained. The organization believes that knowledge is power. As we provide information to patients, they can be empowered to make the best decisions regarding engagement with clinical trials, investigators, and other aspects of the new treatment development process.
In celebration of Rare Diseases Day on the 28th of February, the organization is encouraging rare disease patients and parents of children with rare diseases, to like us on Facebook, enter contact details on the website.
About Putting Rare Diseases Patients First!
Putting Rare Diseases Patients First! is a 501 (c) (3) organization that has a Direct to Patient strategy. The goal is to empower patients with rare diseases and parents of children with rare diseases, by providing information on clinical trials, new treatment development, informed consent, and other areas of the new treatment development process, which they would not otherwise have access to. This information is provided by interactive Webinars, a Blog, an email newsletter, a Website, a LinkedIn Group, and Social Media (Facebook page, Twitter, Instagram, etc.).
Lorna Speid, PhD
President, Putting Rare Diseases Patients First!
(858) 793-1295 | email@example.com