Join Us for The Global Genes Week In Rare

[00:00:03] I'm Effie Parks. Welcome to Once Upon A Gene, the podcast. This is a place I created for us to connect and share the stories of our not so typical lives. Raising kids who are born with rare genetic syndromes and other types of disabilities can feel pretty isolating.

[00:00:20] What I know for sure is that when we can hear the triumphs and challenges from others who get it, we can find a lot more laughter, a lot more hope, and feel a lot less alone.

[00:00:31] I believe there are some magical healing powers that can happen for all of us through sharing our stories, and I'll take all the help I can get. Once Upon A Gene is proud to be part of

[00:00:45] Bloodstream Media. Living in a family affected by rare and chronic illness can be isolating, and sometimes the best medicine is connecting to the voices of people who share your experience. This is why Bloodstream Media produces podcasts, blogs, and other forms of content

[00:01:01] for patients, families, and clinicians impacted by rare and chronic diseases. Visit bloodstreammedia.com to learn more. Hey there everyone! Welcome back to Once Upon A Gene. I'm your host Effie Parks, and today I am going to talk about the 2024

[00:01:17] Week in Wear with Global Genes. Okay? So get your phone out, make a note, go to your calendar, block it off if you haven't yet already. If you're a part of the rare disease community or

[00:01:28] if you love someone who is, you're going to want to hear this. So mark your calendars, September 25th to the 28th because Global Genes is hosting the Week in Rare event, and this year unfortunately it's not in San Diego, California, so I'm still a little bummed

[00:01:45] about that. But it is in a cool city. It's in Kansas City, Missouri, and this is obviously not just any event, okay? This is the powerhouse week packed with three incredible advocacy events that you simply cannot miss. The Rare Health Equity Forum, the Rare Advocacy Summit, and the

[00:02:01] Rare Champions of Hope Awards recognition ceremony, which is always super fun. Why should you attend? Let me paint a little picture for you. It is four days filled with sessions on community, on capacity building, empowering rare disease advocates, patients, and caregivers, helping

[00:02:20] your organizations become research ready, and promoting equity in health care. It's an opportunity to connect with your fellow advocates and friends who are family, to learn from the top experts from around the world, and to honestly just revel in the meaningful connections that you have and that

[00:02:39] you'll gain and that could lead to future collaborations. So whether you're a first-timer or if you're a seasoned attendee like so many that are there, there's honestly something for everyone. So on September 25th, they're kicking things off with committee meetings and a special freshman

[00:02:57] orientation. So if you're new and you're scared, that whole thing is for you. You're going to have a buddy buddy and they're going to give you the download and be your friend there so you're not

[00:03:06] going to feel alone until you're comfortable introducing yourself or when someone says hi. So it's a great opportunity for the newbies to get acquainted. Then on September 26th and 27th, it's all about the Rare Advocacy Summit, my favorite part, and the Champions of Hope Awards.

[00:03:23] So these days are jam-packed. There's so many amazing insightful sessions and advocacy best practices, actionable strategies, everything that will help you make a difference in our community. Plus there's a chance to go to the Champions of Hope Award Ceremony which is really great

[00:03:40] and they celebrate everyone who's driving change and inspiring hope. Let's not forget the grand finale on September 28th, the Rare Health Equity Forum. This forum is all about addressing disparities and health care in ensuring that every rare disease patient has access to the resources

[00:03:54] that they need. Now I know attending a big event like this can be a bit daunting and especially if it's your first time but trust me, the community at the Global Genes Summit is so incredibly welcoming

[00:04:05] and supportive. You're going to find friends who are like family and you're going to be leaving feeling so lit and inspired and empowered and ready to take on the world, I promise you.

[00:04:15] Kansas City is a cool spot and it's going to be held at the Lowe's Hotel which is so gorgeous. I googled it, I can't wait. It looks like the layout is going to be really great for

[00:04:26] even just being able to run into everyone. So it's the perfect backdrop. One of the best parts about Week in Rare is the chance to meet your rare disease heroes, hello! Whether it's somebody you've

[00:04:34] looked up to for years or a future hero that you haven't even met yet. This conference is like a family reunion, Mike Gralia from Syngap calls it that and I could not agree more. You will get to

[00:04:46] hug your friends in person and meet some for the first time and let me tell you, it is so just magical. It's just magical but you might lose a little bit of sleep because there are some,

[00:04:57] you know, rare disease warriors who can really rally and they want to spend every waking moment with each other. So it's a time to learn, to fill your cup and to celebrate the incredible

[00:05:07] strength and resilience of our community. So what are you waiting for? Go to globalgenes.org, please register, follow the yellow brick road to Week in Rare and join us from September 25th

[00:05:18] through the 28th in Kansas City, Missouri. Register now at globalgenes.org and message me if you have any questions, message them if you have any questions. The sooner the better. I don't know

[00:05:30] how many hotel rooms are left but get there and don't feel like you have to stay for the entire thing. I know how hard it can be to get out and get someone to watch your family so if you can

[00:05:39] only go to some of it, go look at the agenda and decide which part is really going to be the best for you. So thank you as always for tuning in. Stay hopeful, stay connected and keep chasing

[00:05:51] those glimmers of positivity. I hope you've been enjoying this podcast. If you like what you hear, please share this show with your people and please make sure to rate and review it on iTunes

[00:06:02] or wherever you get your podcasts. You can also head over to Instagram, Facebook and Twitter to connect with me and stay updated on the show. If you're interested in sharing your story or if you

[00:06:13] have anything you would like to contribute, please submit it to my website at effyparks.com. Thank you so much for listening to the show and for supporting me along the way. I appreciate you

[00:06:24] all so much. I don't know what kind of day you're having but if you need a little pick me up, Ford's got you.