About

Rare Disease Day is on Sunday, February 28th, 2021 and I'd love to know how you're celebrating and what Rare Disease Day means to you. Share a short voicemail message with me here! Ben Munoz is the President and Co-Founder of Ben's Friends. The organization is dedicated to ensuring that patients with rare disease or chronic illness and their caregivers, family and friends have a safe and supportive place to connect with others. They're a network of patient communities for anyone affected by rare disease or chronic illness and they're growing every day. EPISODE HIGHLIGHTS Tell us about yourself and how you became part of the rare disease community.  My journey into the rare disease space was in 2006. At the time, I was a student in business school when I got a pain in the back of my head and rushed to the emergency room. After an emergency surgery, I learned I had a rare type of stroke at 29 years old. It was called an Arteriovenous Malformation (AVM). I was in ICU for a while after surgery and later was dealing with a lot of panic around the condition and navigation information, treatment, risks and the overwhelm of it all. I had resources online through support groups and mailing lists, which is when I learned of the possibility of connecting with others who had my condition, though it was limited. I began thinking of how to create a website where people could connect with others with similar conditions. I started with a Facebook community of others with AVM. With the success and growth of the group, I went on to creating an additional support group for Trigeminal Neuralgia (TN) which was also successful and then Ataxia. I noticed the trend that people were looking for support and that there were very few support opportunities. From that, the non-profit was founded and we have more than 40 communities to date, each focused on one rare disease.  What compelled you to seek out support so quickly? Has there been a ripple effect that's resulted from being a Ben's Friend's contributor? What is your favorite Ben's Friends story? How do people join Ben's Friends and what if their disease isn't listed on your website? LINKS AND RESOURCES MENTIONED Ben's Friends https://www.bensfriends.org/ Make a Donation to Ben’s Friends https://www.bensfriends.org/paypal-donation/ TUNE INTO THE ONCE UPON A GENE PODCAST Spotify https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7 Apple Podcasts https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347 Stitcher https://www.stitcher.com/podcast/once-upon-a-gene Overcast https://overcast.fm/itunes1485249347/once-upon-a-gene CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/ Leave a voicemail https://effieparks.com/speakpipe