On June 30th, we hosted a fascinating and informative webinar titled “Advocating for Rare Diseases“.
We had Katelyn Laws (Rare Disease Legislative Advocates Program Coordinator) give a great outline of what advocacy is, what types of advocacy there are, and how to do it. AnCan’s Sarcoidosis virtual support group moderator Cathleen Terrano moderated and sparked fascinating conversation with our panelists Ritchie Johnson (Renal Medullary Carcinoma), Charles Mickles (Young Onset Parkinson’s Disease), and Trina Massey Davis (Sarcoidosis).
I had the pleasure of jumping in for the Q&A segment, which was a wonderful (and real!) discussion many topics, such as discouragement when advocating, how to write out your story, and more.
Watch this phenomenal presentation here:
Special thanks to Myovant Sciences – Pfizer, and Foundation Medicine for sponsoring this webinar.
To view the slides from this webinar, click here.
For information on our peer-led video chat VIRTUAL SUPPORT GROUPS, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.