Where can I listen to this podcast?

This podcast is available on 7 platforms including Apple Podcasts, Spotify, and more. You can also use the RSS feed directly.

Rare Together

Claim This Podcast

by LDA Research

5.0(6 reviews)

14 episodes

Updated Weekly

Accepts GuestsHas SponsorsLocation 🇬🇧

Podcast Overview

Welcome to Rare Together, the podcast series produced by LDA Research. Join us as we bring together individuals living with rare diseases to share their personal stories and experiences in a series of one-to-one conversations. Rare Together offers individuals, including those living with rare diseases, caregivers, family members, and healthcare professionals, the opportunity to hear from others affected and gain deeper insights into the unique complexities associated with different rare diseases. Read more and apply to be a future guest: https://ldaresearch.com/rare-together

Language

🇺🇲

Publishing Since

7/5/2023

Visit Website View on Apple Podcasts RSS Feed

Reach the team behind Rare Together

Verified contact details for this show aren't on file yet — sign up to get notified when they land.

Recent Episodes

April 4, 2024

“There is something in me that you aren’t seeing” featuring Milla and Milly

Welcome to Episode 6 of Rare Together. This week, we are sharing Milla and Milly’s stories. Milla, from Sweden, will talk about her experience with Leber’s Congenital Amaurosis (LCA), which she was diagnosed with in 2002. Milla has also been diagnosed with Autism and Attention-Deficit/Hyperactivity Disorder (ADHD). She is joined by Milly, from the UK, who talks to us about her experiences with Sporadic Hemiplegic Migraines, Lipoedema, Postural Tachycardia Syndrome (POTS), Ice Pick Headaches, and Visual Snow Syndrome. Join us for an insightful conversation with our guests. We will discuss the complexities that can arise when someone is neurodivergent and diagnosed with a rare disease. Additionally, we will explore the challenges females face in accessing treatment for rare diseases, their hopes for the future and many other related topics. Please note that this conversation discusses themes of sexual harassment in a medical setting. Andrew Grant returns as host and facilitates this conversation; Andrew is a highly experienced medical research consultant with LDA Research, an international medical market research organisation working in the pharmaceutical industry and medical device sectors. We’ve also created a growing and supportive community of people from across the globe affected by rare diseases. If you or someone you care for is affected by a rare disease diagnosis, you can join the conversation online by joining our private Facebook group, the Rare Disease Network (<a href="https://www.facebook.com/groups/rarediseasenetwork">https://www.facebook.com/groups/rarediseasenetwork</a>). <ul> <li>(00:00) Podcast Introduction</li> <li>(01:28) Introducing Milla</li> <li>(05:11) Introducing Milly</li> <li>(09:11) How has LCA impacted Milla’s life?</li> <li>(12:10) Accessing healthcare as a female</li> <li>(19:08) Power imbalances in healthcare</li> <li>(22:57) Finally accessing effective care and treatment</li> <li>(24:20) The role of support networks in Milly and Milla’s journey</li> <li>(27:38) Gene therapy for LCA</li> <li>(31:13) Hopes for the future</li> <li>(34:50) One thing from their rare disease journey</li> </ul>

March 28, 2024

“The word you never want to hear” featuring Joyce and Jane

Welcome to Episode 5 of Rare Together. In this week’s episode, we are joined by 15-year-old Joyce and her mother, Jane, from New Jersey. Joyce was born with a rare genetic condition called Shwachman-Diamond Syndrome, which was diagnosed when she was aged 2. Shwachman Diamond Syndrome affects her digestive system, blood/bone marrow, skeletal systems, and immune condition. There is currently no known cure, and the average life expectancy for Shwachman-Diamond Syndrome is around 35, but thankfully, there are documented cases of individuals surpassing this. Join us in this insightful conversation as we hear how Joyce manages her condition at school, living life to the fullest with her condition, and Jane’s perspective as a rare disease parent, among many other topics. Andrew Grant returns as host and facilitates this incredible conversation; Andrew is a highly experienced medical research consultant with LDA Research, an international medical market research organisation working in the pharmaceutical industry and medical device sectors. We’ve also created a growing and supportive community of people from across the globe affected by rare diseases. If you or someone you care for is affected by a rare disease diagnosis, you can join the conversation online by joining our private Facebook group, the Rare Disease Network (<a href="https://www.facebook.com/groups/rarediseasenetwork">https://www.facebook.com/groups/rarediseasenetwork</a>). <ul> <li>(0:00) Podcast Introduction</li> <li>(0:50) Introducing Joyce and Jane</li> <li>(2:01) Managing Shwachman-Diamond Syndrome at school</li> <li>(3:15) Jane’s experience as a rare disease parent</li> <li>(5:03) Transition to caring for a teenager</li> <li>(6:08) Joyce’s journey into teenagehood</li> <li>(8:05) The prognosis for Shwachman-Diamond Syndrome</li> <li>(11:08) Growing up with a rare disease</li> <li>(12:09) Meeting other families and kids with rare diseases</li> <li>(15:57) How Jane discovered that Joyce has a rare disease</li> <li>(18:53) Munchausen's Syndrome complex relationship with rare diseases</li> <li>(20:07) The strain that rare diseases can have on family dynamics</li> <li>(23:12) Research efforts for Shwachman-Diamond Syndrome</li> <li>(26:34) How to make the most of life with a rare disease</li> </ul>

March 21, 2024

“The doctors had to look it up” featuring Dawn and David

Welcome to Episode 4 of Rare Together. In this episode, we have the honour of bringing Dawn and David's story to you. Dawn, who is from Alberta, Canada, talks to us about her rare diseases - Hypogammaglobulinemia, Hemiplegic Migraines, and Pituitary Adenoma, which has resulted in secondary adrenal insufficiency. Joining her is David from Los Angeles, USA, who shares his experiences with Acromegaly, Diabetes Insipidus, adrenal insufficiency, and the stroke he suffered as a result of a surgery he underwent. Join us for another insightful conversation as we delve into how their rare conditions have affected their daily life. We discuss the adjustments they’ve had to make due to their conditions, the complexities associated with adrenal insufficiency, and the ripple effect their diagnosis has had on loved ones, among many other related topics. Andrew Grant returns as host and facilitates this incredible conversation; Andrew is a highly experienced medical research consultant with LDA Research, an international medical market research organisation working in the pharmaceutical industry and medical device sectors. We’ve also created a growing and supportive community of people from across the globe affected by rare diseases. If you or someone you care for is affected by a rare disease diagnosis, you can join the conversation online by joining our private Facebook group, the Rare Disease Network (https://www.facebook.com/groups/rarediseasenetwork). <ul> <li>(0:00) Podcast Introduction</li> <li>(01:07) Introducing Dawn</li> <li>(02:47) Introducing David</li> <li>(04:15) How Dawn’s life has been affected</li> <li>(06:15) How David’s life has been affected</li> <li>(07:17) Experiencing an adrenal crisis</li> <li>(10:30) “Doctors had to look up adrenal insufficiency”</li> <li>(11:26) Interacting with HCPs who aren’t familiar with rare diseases</li> <li>(14:36) David’s surgery that resulted in him having a stroke</li> <li>(15:24) How rare diseases have affected family life</li> <li>(19:20) Meeting other people with the same rare disease</li> <li>(21:41) The complexities that come with self-medicating</li> <li>(23:51) Silver linings uncovered in Dawn & David’s rare disease journey</li> </ul>

14 total episodes available

Deep-dive analytics for Rare Together

Frequently asked questions

Have a different question and can't find the answer you're looking for? Reach out to our support team by sending us an email and we'll get back to you as soon as we can.

What is Rare Together?: Welcome to Rare Together, the podcast series produced by LDA Research. Join us as we bring together individuals living with rare diseases to share their personal stories and experiences in a series of one-to-one conversations.

Rare Together offers individuals, including those living with rare diseases, caregivers, family members, and healthcare professionals, the opportunity to hear from others affected and gain deeper insights into the unique complexities associated with different rare diseases.

Read more and apply to be a future guest: https://ldaresearch.com/rare-together
How often does this podcast release new episodes?: This podcast updates weekly.
Where can I listen to this podcast?: This podcast is available on 7 platforms including Apple Podcasts, Spotify, and more. You can also use the RSS feed directly.
Does this podcast accept guests?: Information about guest appearances is not available.

Legal Disclaimer

Pod Engine is not affiliated with, endorsed by, or officially connected with any of the podcasts displayed on this platform. We operate independently as a podcast discovery and analytics service.

All podcast artwork, thumbnails, and content displayed on this page are the property of their respective owners and are protected by applicable copyright laws. This includes, but is not limited to, podcast cover art, episode artwork, show descriptions, episode titles, transcripts, audio snippets, and any other content originating from the podcast creators or their licensors.

We display this content under fair use principles and/or implied license for the purpose of podcast discovery, information, and commentary. We make no claim of ownership over any podcast content, artwork, or related materials shown on this platform. All trademarks, service marks, and trade names are the property of their respective owners.

While we strive to ensure all content usage is properly authorized, if you are a rights holder and believe your content is being used inappropriately or without proper authorization, please contact us immediately at hey@podengine.ai for prompt review and appropriate action, which may include content removal or proper attribution.

By accessing and using this platform, you acknowledge and agree to respect all applicable copyright laws and intellectual property rights of content owners. Any unauthorized reproduction, distribution, or commercial use of the content displayed on this platform is strictly prohibited.