Rare Disease/Conditions
Meet other local people interested in Rare Disease/Conditions: share experiences, inspire and encourage each other! Join a Rare Disease/Conditions group.
786
members
7
groups
Largest Rare Disease/Conditions groups
Newest Rare Disease/Conditions groups
The Hibiscus Health Autoimmune Empowerment Circle
10 Members
HD Hangout STL
0 Members
Clinical Genetics and Genomic Medicine in Mexico
15 Members
Rare Disease and Autoimmune Support Group
72 Members
(Group Closed) Northwest Narcolepsy Support Group
0 Members
Narcolepsy Support Group of San Diego County
129 People w/ Narcolepsy or IH
Frequently Asked Questions
Yes! Check out rare disease/conditions events happening today here. These are in-person gatherings where you can meet fellow enthusiasts and participate in activities right now.
Discover all the rare disease/conditions events taking place this week here. Plan ahead and join exciting meetups throughout the week.
Absolutely! Find rare disease/conditions events near your location here. Connect with your local community and discover events within your area.
Rare Disease/Conditions Events Today
Join in-person Rare Disease/Conditions events happening right now
Fun & easy way to play more tennis (read event description)
We’re still working to get more people into these Meetups, but our goal is to give PlayYourCourt members a few social tennis outings each week in addition to your practice sessions and Challenge League matches.
These Meetups are co-ed, super laid back, and all skill levels are welcome. Post your skill level and a suggested court in the comments section so we can round up as many players as we can for some tennis fun!
Also, if you’re looking to meet new practice partners or play some matches and you aren’t already in the PlayYourCourt Community, you can go here to see what we’re all about and sign up:
https://www.playyourcourt.com/tennis-community/columbus-oh/meetup/
If you love tennis, we’d love to have you! Be sure and watch the quick video that explains how everything works.
Happy hitting!
- Scott
Walk & Talk About Life's Big Questions
[The Board Walks](http://www.theboardwalks.com/) are for curious people who love deep conversations.
If that sounds like you, **bring a thoughtful topic** and join us for a 5-mile walk (10,000+ steps!).
**HOW IT WORKS**
**Step 1: Bring a topic**
Before you arrive, think of **one** topic you want to explore. A question. A thought that's been on your mind. An obsession you want to geek out on. This is your ticket to the event.
**Step 2: Circle up & share**
We gather in a circle. Your friendly walk host gives a speech to set the tone. Everyone shares: your name, what you're grateful for, and your topic. That's it. 60 seconds.
**Step 3: Walk, talk & float**
We walk 5 miles. You naturally drift into conversation with 2-3 people at a time, pulled by topics that spark your curiosity. When you're ready to move on, just say: "I'm going to float!"
**Step 4: Feel more alive**
Two hours flies by. You're back where you started — but you feel different. More alive. More energized. More connected to yourself and others. That's why regulars join 20+ times.
*For more details, read our [Orientation Guide.](https://www.theboardwalks.com/orientation)*
**HOW TO BRING A GREAT TOPIC**
A great topic = something you're genuinely curious about.
Recent topics include:
* "What are you passionate about right now?"
* "What makes a good friend?"
* "What's a belief you used to hold that you've completely changed?"
* "How do you want to be remembered?"
* "What would you do if money wasn't a factor?"
Think of your topic like the dish you're bringing to our conversational potluck. If everyone brings an A+ dish (i.e. energizing, uplifting, expansive), we'll all walk away feeling lighter and brighter.
**WHAT TO EXPECT**
This isn't a fitness event with casual chitchat. It's a walking think tank where we explore life's big questions together, beyond small talk. *If you're looking for light banter or a standard networking event, this probably isn't the right fit.*
But if you crave depth, genuine connection, and conversations that make you feel alive? You'll love it here.
**FAQ**
* Wear casual athletic attire and sneakers. It's a long walk!
* We have multiple first-timers at each event. We work hard to create a welcoming, inclusive, clique-free space.
* We welcome people of **all** ages, backgrounds, and industries who align with the [intention](https://www.theboardwalks.com/ground-rules) of this space.
* Rain or shine, we've been out here nearly every week since July 2022. If the event is cancelled, we'll let you know.
* Dogs, babies in strollers, parents, and friends are welcome — please text/email them the event link so they can RSVP and prepare a topic!
**LOGISTICS**
* If you'll arrive over 10 minutes late, we suggest skipping the event. It's hard to find us once we start walking, and your host can't answer messages during the event.
* This walk is designed for everyone to *move together at the same steady pace* (about 20 min/mile). This format works best when the whole group moves in unison. If you have mobility limitations, we kindly encourage you to find an event better suited to your needs.
* Read our [Orientation Guide](https://www.theboardwalks.com/orientation) for full details.
* If you enjoy the event, send **[this](http://www.theboardwalks.com/)** to a friend or sign up for our **[newsletter](https://theboardwalks.beehiiv.com/)**. We're in multiple cities with more on the way. 🤠👋
**IF YOU WANT TO GO DEEPER...**
[The Board](https://stan.store/ellebeecher/p/the-board) is the next step: a high-trust collective for renaissance people devoted to creating, connecting, and building lives that light us up.
* This is a global HQ for people who crave big talk, deep connection, and dream collaborations with people across industries. If the walks feel like a spark... The Board is the fire. Apply [here](https://stan.store/ellebeecher/p/the-board).
Conversacion en español (en persona)
Due to the holiday, the host will not be in attendance and several regulars have said they will not be either.
I will keep the event for those who wish to attend, but keep in mind that there is a chance of low/no attendance.
While some are still meeting online, this is an in person event. Please note that we have attendees of all levels of speaking, including some native speakers. All are welcome!
Also, as we meet at the same time and place each week, many don’t RSVP on the app, so we will likely have more attendees than noted here.
Note: if you are asked to pay and upgrade the Meetup app, this is not necessary. You can ignore this and still attend our meetings.
Find us on our [Facebook group](https://www.facebook.com/share/g/1EKw86WJCp/?mibextid=wwXIfr).
Late Saturday morning walk at the Quarry Metro Park Trails
Join the Introverts of Columbus at Quarry Trails Metro Park for an afternoon walk in the Park. We'll meet near the parking lot area for about 15 minutes before heading out to chat and hike through the metro park.
This will be a casually paced walk to allow people to get to know each other, and enjoy nature at the same time.
🚨🚨 Please note that there are multiple parking areas for the Quarry Trails Park, and please note the address in the event to get to the correct starting area! 🚨🚨
Rare Disease/Conditions Events This Week
Discover what is happening in the next few days
Golden Lotus Meditation & Lecture - is cancelled!
Join us for our Sunday Meditation Service - Is cancelled!
COUNT RMH Housewarmer Volunteering (Ronald McDonald House)
Some trained COUNT volunteers work together once a month at RMH (http://www.rmhc-centralohio.org/volunteer.php) as Housewarmers (usually on the 1st Sunday from 1 – 5 PM). Some schedule other shifts at their convenience. You may try this out with less fuss by following a "Fast track" or go through the normal process.
Fast track
• Arrange a time to shadow a COUNT volunteer. Call Dave Nohle at 614-268-9558 (cell).
• Show up and try it out.
• Complete application, etc. later.
Normal process
• Complete an online application (http://rmhc-centralohio.org/volunteer/).
• Attend orientation in advance.
• At orientation you will complete forms agreeing to keep family/patient info private and allowing a background check and tour the facility.
• Complete one training shift. Daily shifts are: morning 9 AM - 1 PM, afternoon 1 - 5 PM and evening 5 - 9 PM.
• Schedule shifts online using the on the RMH scheduling system (http://www.volgistics.com/ex/portal.dll/?FROM=32895).
The Ronald McDonald House (RMH) provides housing and meals for families with sick children. The Columbus RMH is the largest in the world with 137 rooms. COUNT has been volunteering there since May 2014.
Housewarmers work with RMH guests to provide a home-like environment - greet, assist with family needs, answer phones, give tours, assist with checkin/checkout, prepare guest rooms after checkout, clean facility, laundry, restock supplies and staff the front desk. RMH Housewarmers volunteer at least one four-hour shift a month. All Housewarmers must complete an application and agree to a background check before they can be full fledged volunteers.
Creativity Circle: Simple Sun Catchers
Want to see your work shine and put your pride on display? Then come to July's Creativity Circle! We will be making simple Suncatchers with tissue paper! Seats and supplies limited! Come while you can for as long as you like! Westerville Public Library in Meeting Room D.
Rays Of Light Spiritualist Church Service
Rev. Steven Clevenger is an ordained spiritualist minister with over 40 years experience as a Spiritual Healer, Clairvoyant and Spiritual Teacher, educated and trained at the White Lily Chapel.
Rev. Siobhan Wolf Shaffer is an ordained spiritualist minister and certified medium and healer with over 20 years experience. She began her development in 1988 in Pennsylvania and continued when she moved to Ohio in 1998 where she studied at Rays of Lights Church with Rev. Steven Clevenger.
Our full worship services consist of an inspirational lecture, healing meditation, and messages from the spirit world that serve to demonstrate evidence of eternal life.
Please visit our Official Church Website (http://raysoflightchurch.com) for more information.
Rare Disease/Conditions Events Near You
Connect with your local Rare Disease/Conditions community
Marketing Monday Networking
Monthly working lunch for Columbus business owners. One specific topic, one to three actions you can run this week.
You can be the best at what you do and still be invisible. If local buyers cannot find you, the phone does not ring.
Marketing Monday Lunch + Learn is a monthly working lunch for Columbus business owners focused on building relationships, local networking, and local marketing. Every kind of local business welcome. No pitch round, no pressure, no upsell.
**This month**
Most local businesses pick one or two places to be visible and call it good. The result is inconsistent calls and a feeling that marketing is not working. We will walk through the three places every local business needs to show up, plus the fourth place most owners ignore that quietly produces the warmest leads.
**What to expect**
Doors open at noon. Order lunch and drinks at the cafe counter or bring your own. You get real conversation with other local owners and a focused marketing lesson. You leave knowing people and with one to three actions to run that week. The room is reserved through 1:30 PM.
**Who this is for**
Any local business owner who wants clearer marketing direction and real local relationships. Service businesses, retail, home services, professional services, online owners building local presence, anyone serious about being part of the Columbus business community.
**Not the right fit if**
You are here to pitch the room or recruit for an MLM.
**Details**
* Second Monday of every month
* 12:00 to 1:30 PM
* Good Cafe Easton, 4400 Easton Commons, Ste 150, Columbus, OH 43219
* Order lunch and drinks at the counter when you arrive
* Free to attend, RSVP required, space is limited
**About the host**
Rita Suzanne is a local marketing strategist and the founder of Local Marketing Method. She runs Visibility is Profitability, the membership where local business owners build the system that keeps their phone ringing. Learn more at learnlocalmarketing.com.
Register here: [https://www.eventbrite.com/e/1989964540509?aff=oddtdtcreator](https://www.eventbrite.com/e/1989964540509?aff=oddtdtcreator)
Speak Easy (Storytelling)
The topic for July is "Shoes"
Speak Easy: true stories, told live.
The idea is simple: an audience, an open microphone, and great stories. Hilarious, gripping, poignant- it's up to you. Audiences are invited to come to listen or come to tell as folks from all corners of Columbus offer their stories live on stage! Held at Wild Goose Creative's warm, intimate space, this night of tales occurs on the 3rd Thursday of every month. Doors open at 6:30 pm, show starts at 7:00 pm. Please arrive early if you want to tell, as we generally only have room for a limited number of tellers, and the sign-up sheet has a tendency to fill up fast.
Formed around the idea that people need stories--they're what hold and draw us together--SpeakEasy celebrates the strangeness and commonness of being human. And in a world of smartphones, Facebook, Twitter, and more . . . it gives people a real, breathing, in-person way to connect.
The night is geared for true stories of all kinds, taking the best tales told around kitchen tables, in darkened pubs, on the street corner, and at late-night parties and giving them an audience. Speak Easy is also a great outlet for performers, writers, and artists looking to share their favorite stories and perfect their skills. We strongly encourage tellers to please tell the story rather than read it so we keep within the spirit of good storytelling and stay engaged with the audience. All are welcome. Hang around after the show for a drink and build community!
Free in-person event: Take Control of Your Mental Health
It’s time to take control of your mental health. How do you get rid of stress, anxiety and uncertainty? These emotions are buried deep in your reactive mind. Find out what the reactive mind is, and in the process find yourself.
Have you ever suffered from a traumatic experience, a deep loss or been through a painful breakup? Has your ability to communicate suffered as a result? And after that, even though you "moved on" did you find that things were never quite the same? Have you ever looked at childhood photos, or reminisced your early life and wondered where that happiness and spark went?
Are your emotions out of your own control? Have you ever felt, even if you aren’t aware of it, that possibly you are getting in your own way of your happiness and success? How does this affect your self-confidence?
Find out what is at the root of all stress, anxiety, depression and self-doubt. Find out how and why you hold yourself back from achieving your goals and having the life you have dreamed of. As soon as you learn what is at the root of these unwanted conditions, you’ll see it is something you can DO something about. You will not be labeled or categorized at this MeetUp.





















