Patient Worthy makes a point to develop relationships with advocacy groups focused on rare diseases in order to help spread awareness, highlight patient experiences, and bring attention to community events. Our list of partner organizations is constantly growing, and we are excited to introduce three of our newest partners in this article.
The BHD Foundation
We are delighted to begin partnering with the BHD Foundation, an advocacy group dedicated to the Birt-Hogg-Dubé syndrome community. This organization was created by the Myrovlytis Trust and the Birt-Hogg-Dubé Family Alliance. Beginning operations in 2011, the BHD Foundation was established with two main goals in mind:
- To advance and promote research into medical and molecular genetics in order to better understand, diagnose, prevent, cure, and relieve Birt-Hogg-Dubé syndrome and freely disseminate the results of such research to the public.
- To advance the education of the public in medical and molecular genetics.
We anticipate releasing more coverage on this rare disease in the future and the organization’s science director, Dr. Katie Nightingale, will soon be a regular article contributor. To learn more about the BHD Foundation, click here.
Patient Worthy has also recently begun partnering with TREND Community, an organization that harnesses data from social media groups (with permission) that is being used, among other things, to satisfy US Food and Drug Administration (FDA) requirements for patient-focused drug development guidance documentation. This data keeps a pulse on the conversations and concerns of the patient group in question.
TREND is our first corporate partner, and we anticipate being able to share some articles from their bloggers. Additionally, we anticipate discussing their work on our podcast “Wait, How Do You Spell That?”
Click here to learn more about TREND Community.
TESS Research Foundation
We have also recently partnered with the TESS Research Foundation. This group is dedicated to the development of a treatment option for epilepsy, specifically epilepsy caused by SLC13A5 deficiency, also known as citrate transporter disorder. This is a rare disease that was only recently discovered to be a genetic cause of epilepsy. TESS Research Foundation aims to help fund critical research for drug development.
We anticipate sharing entries from Science Simplified, a blog created by the foundation and written by Tanya Brown, PhD. Click here to learn more.
Check out our full list of partners here.