Signalise: a Dazzle4Rare Podcast

EP19: Podcasting to Your People with Tips & Advice from Radio Veteran Pete Allen

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 has generously shared his insights on these topics and more, and you won't want to miss his expert advice. In fact, he even has a website where he shares his knowledge and expertise on all things podcasting. You can check out his website at https://carrotcruncher.com/ and see his recommended podcast kit at https://carrotcruncher.com/Recommended_Kit.html. If you have any questions, feel free to email Pete directly at pete.allen@carrotcruncher.com, or connect with him on LinkedIn at https://www.linkedin.com/in/peteallen/.---
Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter. You can find host Kimberly on LinkedIn at @kattague.
 

EP18: Making More Accessible Content 5 Tips and Bonus Tricks for More Accessible Content

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 shade. No shame. Just an open, honest conversation starter about creating website content and other digital or print content that helps more people access your community, as well as the education and support you have to offer. 
 
Below are some of the links to information mention in this week's episode. 
 
AbilityNet Survey
Georgetown University statistic
NIH statistic
LD Online statistic
CDC statistic
W3C Web Content Accessibility Guidelines
Google Lighthouse Extention
WAVE Browser Tool
AChecker Tool
aXE Dev Tools for Accessibility 
Colour Contrast Analyser
Remember, while these tools can be helpful in identifying accessibility issues, they do not replace a comprehensive accessibility audit conducted by an experienced accessibility consultant. 
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Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter. You can find host Kimberly on LinkedIn at @kattague.

EP17: Traveling the Road to EDIRA with Dr. Sondra Butterworth and Sam Fillingham

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. Communities have been looking for a way, a place, to find Equality and Diversity in rare disease spaces with research and clinical trial participation as well as in drug development, having a place at the proverbial table. While big stakeholders across healthcare centered spaces are starting to understand the importance of patient inclusion, there is still a disparity between what is logically known about including patients versus what they are doing to ensure unique patient perspectives are included.  
As Sam so aptly said during the Rare Disease Day live stream, "We are the experts in our own conditions." EDIRA is a step towards including patients as experts in their own conditions, and it is a step towards a brighter, more inclusive future.
 
Episode resource links:
Spectrum 10k Consultation
Update: Statement on NHLBI decision to resume participant enrollment in the Pilot and Feasibility Study of Hematopoietic Stem Cell Gene Transfer for Sickle Cell Disease
Full "Road to EDIRA" Live Stream Webinar on Rare Disease Day
EDIRA Event Brite tickets
Sponsor: Costello Medical "Giving Back" programme
Sponsor: COUCH Health
Speaker: Dr. Natasha Radcliffe
In-Conversation with Elizabeth Davenport
In-Conversation with Hazel Kim from Chinese Autism UK
Event Ambassador: Glenn Webbe
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Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter. You can find host Kimberly on LinkedIn at @kattague.

EP16 -Looking back at Rare Disease Days past, Community News, and Awareness Days in March

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 Statementhttps://www.theaftd.org/mnlstatement23/
 
"End of Amazon Smile [...]" Global Genes Letterhttps://globalgenes.org/blog/end-of-amazonsmile-program-impacts-non-profits/?utm_source=twitter&utm_medium=social&utm_campaign=amazonsm
 
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Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter. You can find host Kimberly on LinkedIn at @kattague.

Bonus EP2: Chatting about Stiff Person Syndrome with Guest, Lauren McDermott

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 like without the fancy editing. 
 
Fellow "Lone Wolf" advocate Lauren McDermott joins us to talk about her atypical SPS diagnosis and a bit about SPS. 
 
SPS on NORD - https://www.ninds.nih.gov/health-information/disorders/stiff-person-syndrome#:~:text=Stiff-person syndrome (SPS),can set off muscle spasms
 
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Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter. You can find host Kimberly on LinkedIn at @kattague

EP15: Rare Disease Day Events and Celine Dion’s Ultra-Rare Diagnosis with Guest Lauren McDermott

On this episode of Signalise: a Dazzle4Rare podcast, we’re helping you get ready for Rare Disease Day 2023 with events, news, and guest Lauren McDermott. According to RareDiseaseDay.org, you can contribute to this global action and awareness day are, “By Sharing your colours via social media, events, illuminating buildings, monuments and homes, by sharing experiences online and with friends, by calling on policy makers and shining the light on people living with a rare disease, collectively we aim to change and improve lives of the 300 million people worldwide.”
We recommend reaching out to your local representative this day. You can find links to representatives and members of parliament below for North America, the UK, and India. 
USA - https://www.house.gov/representatives/find-your-representative
UK - https://members.parliament.uk/FindYourMP
Canada - https://www.ourcommons.ca/members/en
India - https://www.india.gov.in/my-government/whos-who/members-parliament
 
To find out more about the upcoming EDIRA conference, head to http://rareqol.co.uk or follow Dr. Sondra Butterworth via Linkedin. 
 
Kerry Wong from the US Sarcoidosis community, among others, has big news to share with all our rare communities on her Twitter or Facebook page on the 28th in time for RDD 2023. 
 
For all the awareness days mentioned in this episode, head over to the Rare Disease Awareness Days calendar. For the events, head to the Community Events calendar. Both are available on iOS, Android, and most devices in your calendar application. 
 
As many of you will already have heard, beloved French Canadian singer Celine Dion announced her rare disease diagnosis in December 2022.  Stiff Person Syndrome (SPS) patient and "Lone Wolf" advocate Lauren McDermott joins us to talk about her atypical SPS diagnosis. To learn more about SPS, you can find detailed information on the National Institutes of Health website.
 
Look for a bonus episode later with Lauren where we casually chat about her diagnosis and her journey with SPS. 
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Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter. You can find host Kimberly on LinkedIn at @kattague.

EP14: Rare and Associated Community Love Letters, News, and More

On this Valentine’s episode of Signalise: a #Dazzle4Rare podcast, we’ve got news for Amazon Smile charities, we’ve got a lot of awareness days in the diary, and we’ve got your love letters. 
If you don't have pen and paper handy, not to worry! All the dates mentioned are in the #Dazzle4Rare International Awareness Days calendar. 
 
Links Mentioned: 
Genetic and Rare Diseases (GARD) - Marfan Syndrome
SCN8A Syndrome
Epilepsy Sparks Insights Podcast with Torie Robinson
Rare Disease Day 28th February
 
You can read the New York Times article by clicking the title," Amazon Axes ‘Smile’ Charity Program, Citing Limited Impact."
 
Love Letters
David Ross - Rare Disease Men's Mental Health Advocate & Group Leader
Melissa Van Houten - Gastroparesis: Fighting for Change
Heidi Edwards - President and Founder at Sisters’ Hope Foundation 
Susan Foley - Executive Director of HESA and Co-Founder
Lee Reavey - NCBRS Foundation
Sue Routledge - Pitt-Hoppkins UK
Dr Sondra Butterworth PhD., MSc., PGCE., GMBPS. Community Health Psychologist
Lori Verton - ACMCRN President, Founding Director
Alan Thomas - Ataxia and Me
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Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter. You can find host Kimberly on LinkedIn at @kattague.
 
 

EP13: Mixed data methods in rare disease and how patient narratives can impact the diagnostic journey with Dr Sondra Butterworth

On today’s episode of Signalise: a Dazzle4Rare podcast, we’re joined by Dr Sondra Butterworth PhD, a community health psychologist and so much more. Since discovering she was a carrier of a rare gene, she began to examine the patient journey and how patient narratives can impact the diagnostic journey. Through her work with RareQol they released Whose Voice is it Anyway, a rare community networking campaign. She has collaborated with Medics4RareDisease and participated in many rare disease consultations and other collaborative projects. You can find Dr Butterworth on LinkedIn and through the RareQol website. You can reach out to the team at RareQol at info@rareqol.co.uk. --
Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter. You can find host Kimberly on LinkedIn at @kattague.

EP12 - How algorithms and platform acquisitions are affecting rare disease social media right now

If there is something you are curious about, passionate about, or angry about, there’s a platform for that. Platforms engulfed in negativity aren't great but these platforms have also given a louder voice to rare and associated communities that exist online. 
In this episode, Kimberly discusses how rare disease communities have thrived on social media platforms. She contrasts the past and present of today's rapidly changing social media environment. How will these changes to algorithms and platform acquisitions affect #URCIID communities? 
Listen to this week's episode to find out more. 
 
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Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter . You can find host Kimberly on LinkedIn at @kattague.

EP11: A Very Signalise Holiday Episode with Host Kimberly Thomas-Tague

Welcome to this final full-length episode of Signalise: a #Dazzle4Rare podcast, in 2022. In this episode, Kimberly recalls the start of #Dazzle4Rare and the wonderful folks who helped make that first year happen. She also shares festive holiday tips for enjoying this season in the ways that are most accessible to you, talks about Tiny Tim's medical condition, drops a few silly festive jokes, and more. From all of us at the Signalise family, we thank you for your support in helping us support rare disease patients and organisations by sharing their news, events, and personal stories. If you'd like to continue to support what we do, please share this episode with a family member or friend! Even better, share on your social media and tag us! ---
Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter. You can find host Kimberly on LinkedIn at @kattague.