Signalise: a Dazzle4Rare Podcast

Welcome to the first 2024 episode of Signalise: a Dazzle4Rare podcast! Remember, we're now airing on Fridays. In this episode, we reflect on 2023's significant rare disease developments and look forward to more progress in 2024.    Most Read Rare Disease News of 2023 - FDA's first gene therapy approval for DMD. - Promising treatments for idiopathic pulmonary fibrosis and hemolytic disease of the f...

A quick "bonus" episode to drop to let you know that we'll be making some scheduling changes and 2024 will hopefully fingers crossed be a year of positive changes. But first, a big thanks to our faithful listeners for tuning in today and to this bi-monthly podcast. From this month, January 2024, we're shifting our podcast schedule to Fridays, keeping the podcast bi-monthly.    ---- Don't miss an e...

In this festive episode, Kimberly shares a little holiday spirit by with heart-warming stories of children with rare conditions and their families finding hope. She also shares International Universal Health Coverage Day brought to our community's attention by Dr. Eleonora Passeri of Rare Special Powers (IT). 1. International Universal Health Coverage Day: https://www.un.org/en/observances/univers...

Please note there are audio issues with this episode. I'll be working to upload an improved version later on release date.   In this, Kimberly shares a range of awareness events including International Epilepsy Awareness Day and World Pneumonia Day. A reminder for listeners that events like Bio-IT World Europe event are coming up and can be found on the Events Calendar. Be sure to check out confer...

In this episode, Kimberly shares several important awareness events happening in November, such as International Epilepsy Awareness Month, National CRPS Awareness Month, and Colour the World Orange Day for Complex Regional Pain Syndrome. It also highlights days like World NET Cancer Day, International 15q Day, and Smith-Magenis Syndrome Awareness Day, among others.    The podcast touches on news f...

Hold on to your pointy hats! In this episode, we share many more celebrities with rare or less commonly understood conditions in sci-fi and horror media. The discussion begins with Bruce Willis, who has recently been diagnosed with a rare form of dementia. The conversation extends to other celebrities and their amazing careers in entertainment over the years.    We break up some serious and inspir...

In the latest episode of Signalise, Kimberly performs a speedrun of your Rare and Relevant TL;DR and happy news stories from our D4R community. We've also added new awareness events for October, including the National Disability Employment Awareness Month, and share some exciting news from our friends at GOPI3KS.  Resources - October is National Disability Employment Awareness Month [More info: DO...

In this episode of Signalise, we dive into the world of rare and relevant events. From September's Mitochondrial Disease Awareness Month to October's myriad of awareness campaigns, we've got your calendar covered.    But that's not all!   Stay tuned as we feature a special guest, Daniel De Fabio from The Disorder Channel, who shares insights from Rare Week in San Diego. We had a long chat so only...

In this rare and relevant episode Kimberly delves into various awareness days and months in September. We also talk about upcoming webinars and conferences, share industry resources, and highlight the inspiring "Life After Diagnosis Day" follow-up available on The Disorder Channel.   Stay tuned for voicemails from our listeners, news about Weill Cornell Medicine and New York-Presbyterian Weill Cor...

In this episode, Kimberly discusses various awareness months and initiatives in the global rare community,  beginning with a recap of International Ataxia Awareness Day and a message from Alan Thomas, a rare disease advocate, emphasizing the importance of collaboration and amplifying the rare disease voice.    We highlight awareness months in September, including International Autoinflammatory Awa...

In this episode, Kimberly takes a closer look at the journey we’ve taken together over the last seven years with #Dazzle4Rare. From grassroots, this annual event has been a spark of hope uniting us across multiple continents over the years.  It sure has been a journey in all senses of the word. From hearing people greet each other in various languages in the past to seeing people participate from...

Join us in this special and reflective episode of Dazzle4Rare, where we take a journey through time with some remarkable individuals who have been at the heart of our mission. In anticipation of Dazzle4Rare 2023 this August, we've gathered past and present co-hosts who have been instrumental in making a difference: Sam Fillingham from PIP UK, Lee Reavey from NCBRS, David Ross from the Men's Mental...

Welcome to Signalise: a Dazzle4Rare podcast guest-hosted by Sam Fillingham, CEO of PIP-UK the Poland Syndrome Charity and Torie Robinson of the Epilepsy Sparks podcast.  In this episode, we Sam and Torie share events and news relevant to July 2023. We start with Fragile X Syndrome Awareness Month, Sarcoma Awareness Month, Glioblastoma Awareness Day, World Castleman Disease Day, World Sjogren's Day...

In this episode, we dive into a range of events, discussing various awareness days taking place in July, and highlighting opportunities that focus on patient-centered initiatives for rare diseases.    We also discuss various awareness days in July, including Chronic Disease Day, Glioblastoma Awareness Day, World Castleman Disease Day, World Sjögren's Day, #CTNNB1 Awareness, Legg-Calve-Perthes Awar...

Welcome to this week’s episode of Signalise: a Dazzle4Rare podcast. Bringing you the TL;DR on the the latest in the world of rare and associated conditions. This week,  we'll be discussing what's happening in the realm of awareness, highlighting both rare and non-rare awareness events, spotlighting upcoming conferences in July, and a quick-fire roundup of global news in the rare and associated com...

Happy Pride Month!   Hey, welcome to another episode of Signalise and happy Pride Month 2023! In today's episode, we'll be giving you the rare and relevant TL;DR and LGBTQ+ Price as it intersects with the URCIID or undiagnosed, rare, chronically and invisibly ill, and Disability communities. We acknowledge that people hold a range of beliefs and ideologies, including those shaped by religion or po...

Welcome to this bonus episode of Rare and Relevant TL;DR!  Our regular episode this week, the week of the 24th of May 2023 features a chat with Dr. Nicola Garnier of Screen4Care. Go check that episode out to hear our discussion about new-born screening.  Now, whether this is your first or fifth episode, thanks for being here! It means a lot to me and the folks whose news, events, and guest appeara...

Welcome to this episode of Signalise: a Dazzle4Rare podcast. In this episode, we’re joined by Dr. Nicolas Garnier (French pronunciation: [ ni.ko.la ]) who’ll tell us a bit about himself and his work. We’d planned to discuss Dr. Garnier’s work in new-born screening and the topic broadly but I couldn’t help myself; I wanted to get a more full understanding on his current project, Screen4Care where h...

We're kicking off with a bang! May is jam-packed with event, awareness days, and news! Without further ado, let’s do the darn thing and get to Rare and Relevant, Your TL;DR! First up, it's Huntington's Disease Awareness Month, Acute Disseminated Encephalomyelitis (ADEM) Awareness Month, ALS Awareness Month, Cystic Fibrosis Awareness Month, Ehlers-Danlos Syndrome and Hypermobility Syndrome Awarenes...

Welcome to Signalise: a Dazzle4Rare podcast. If this is your first or your fifth episode of Signalise, thanks for taking the time. You could be doing anything right now but you’re here and we appreciate that! Every month is jam-packed with awareness days, events, and webinars. Wading through all the emails, alerts, and invitations from various organizations like Global Genes, Beacon, Genetic Allia...

Welcome to episode 19 of #Signalise: a #Dazzle4Rare podcast! Today, I'm excited to be joined by Pete Allen, a veteran radio and podcast producer with a wealth of experience in the industry. We'll be addressing some of the most common questions I get asked, like what a podcast is, what work goes into producing one, and whether it's possible to start a podcast with minimal resources or funds.   Pete...

In today’s episode of Signalise: a Dazzle4rare Podcast, I’m taking us down a familiar path that is well-known but perhaps less traveled – creating accessible content online. If it's not the top of your mind, it's not on the top of your list. This episode breaks down the guilt and shame we may feel when created content online that isn't always accessible, even with the bare minimums covered. No sha...

Welcome to this episode of Signalise: a Dazzle4Rare podcast. Today, we’re traveling the road to EDIRA.     While EDIRA may sound like a fantasy realm, a golden landscape where triumph, resilience, and hope hang in the air, it is very much real.     In the face of adversity, rare disease communities continue to perservere, despite circumstances in which their voices are not always heard or valued....

Finally, the day many of us have been waiting for … the 28th of February. Rare Disease Day.  We all think we know all about Rare Disease Day but let’s take a trip in the Way Back Machine and look at this days modest beginnings.   NCBRS  https://www.facebook.com/ncbrsworldwidefoundation/posts/pfbid02cpbnwheAXvtAw2mjV4ffhVg6Au7ML56emwDAiSQVgSDpUV7CXsGWgPByXE6r8brMl#   Willis Family Statement https:/...

As promised in EP15 we present this full unedited audio of Kimberly's informal chat with Lauren McDermott, Stiff Person Syndrome "Lone Wolf" advocate.  Preserved in this chat are moments of brain fog which we both felt was important to share with others. The chat also captures the bouncing around that can often happen with chronic illness and brain fog, revealing what chats like this can sound lik...