Join me at the RARE Patient Advocacy Summit
Updated: Aug 13, 2019
I'm pleased to let you know that I'll be a panelist at the RARE Patient Advocacy Summit in San Diego, September 18-20 at the Sheraton San Diego Hotel and Marina. Sponsored by Global Genes, this is the largest gathering of rare disease patients, caregivers, thought leaders and other rare disease stakeholders in the world.
On September 19 at 10:30 am I'll join Roberta Smith, President of the Alagille Syndrome Alliance, and Gerren Wilson, head of patient partnerships, alliance and advocacy relations at Genentech, to discuss Finding Others and Building Your Community.
Then on Saturday, September 21, I'll meet with the RARE Foundation Alliance organization leaders.
Inspired and motivated
For the past two years I have presented social media advice at RARE on the Road events in Salt Lake City and Birmingham, Alabama. I've been inspired and motivated by the patients, caregivers, family members, and advocates I've met at these events. I am quite excited to connect with so many others at this conference.
Here are a couple of tips about finding others and building community I'll share at the Summit:
Search, then start with strategy
Search all the current information available about your disease or illness. Then start with strategy. What is your objective? Who are you trying to reach? What do you want them to know, feel, and do? What is the best social media platform to reach them? How can you measure your success?
Once you’re clear about strategy, identify the social media channel that best reaches your audience. Start sharing the things you care most deeply about. Post interesting, useful information using text, video, or images. Help people understand their disease, their options, and the support you can provide.
Build a community
Build a social media community where those who experience your disease can gather to share their fears, their heartaches, their hopes, their advice, their successes, and, sometimes, their grief. Provide accurate information. Facebook groups, problematic as they are, can provide a safe place.
Our ability to connect with others has advanced light years in the last decade. Even with all its warts, social media is an incredible gift — sometimes even a miracle —when it connects people and information at the time of greatest need.
If you have an interest in rare diseases, I hope you'll join us.