Rare Together

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 Spo...

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 know...

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 Acrome...

Welcome to Episode 3 of Rare Together. In this week’s episode, Hannah from Mülheim An Der Ruh in Germany joins us. In 2022, Hannah was diagnosed with FLNA Deficiency, a rare genetic disease that affects her organs, muscles, joints and mobility. FLNA deficiency refers to mutations in the FLNA gene, which is responsible for producing the protein filamin A. Filamin A plays a crucial role in maintaini...

Welcome to Episode 2 of Rare Together. This episode follows a slightly different format because we are joined by one guest this week, Megan from New York, USA. Megan is a mother to her son, who has been diagnosed with FOXG1 syndrome. FOXG1 syndrome is a rare genetic neurodevelopmental disorder caused by a mutation in the FOXG1 gene. This gene is essential for early brain development and, when impa...

In this episode of Rare Together, we’re joined by two people affected by rare diseases on opposite sides of the globe: Wendy, from Anglesey, Wales, is living with multiple conditions, including EDS, POTS and Psoriatic Arthritis, and Taylor, who you may also know from her Substack ‘Rare Disease Girl ’, living in Santa Monica, who is living with Atypical HUS.  Join us in this insightful conversation...

Rare Together, the exclusive podcast series brought to you by LDA Research, is back for Season 2! 🎉 Discover thought-provoking insights and inspiring stories from individuals worldwide impacted by rare diseases. Gain a deeper understanding of their journeys and the challenges they face, and join us to explore these compelling narratives firsthand. New episodes will be released every Thursday on Y...

In this episode of Rare Together, we’re joined by two people affected by multiple rare diseases. Millie from Bel Air, US, and Liz in Cardiff, South Wales. Liz has recently been diagnosed with a rare form of Scleroderma which has led to two further rare diseases, and Millie is living with Scoliosis, Spastic Quadriparesis, and Dysautonomia.  Join us in this really engaging conversation as we learn a...

In this episode of Rare Together, we’re joined by two people affected by rare diseases in the UK; Bobbie, from Northumberland, who has been living with lymphedema since 1985 and Joanna in Kent, who is living with Dercums Disease.  Join us in this insightful conversation as we hear how these two wonderful ladies’ lives have been affected by their rare disorders. From educating healthcare profession...

In this episode of Rare Together, we’re joined by two people affected by rare hormonal disorders; Libby, from Belfast in Northern Ireland, who has been living with Addisons Disease for the last decade and Jonathan from Long Island in the United States, who has been diagnosed with Acromegaly.  Join us in this emotional chat as we hear how Libby and Jonathan’s lives have been changed dramatically as...

In this episode of Rare Together, we’re joined by two people who are caring for loved ones with rare conditions so that we can learn more about the impact a rare disease diagnosis has on those around us. We have Candace from Fairview in Texas, US, whose 11-year-old daughter has recently been diagnosed with having the Cask gene mutation, and Anna Mae from Henley on Thames in the UK, whose 4-year-ol...

In this episode of Rare Together, we’re joined by two people affected by rare diseases: Jan, living with Burning Mouth Syndrome in Iowa in the USA, and Amanda living with Relapsing Polychondritis, a rare autoimmune condition, in Okehampton, in the United Kingdom. Join us in this insightful conversation as we learn more about their rare conditions and how their day-to-day lives have been impacted s...

In this episode of Rare Together, we’re joined by two people affected by rare diseases on opposite sides of the globe: Jeannie, from Ontario Canada is living with one of the rarest, and newest, forms of Thyroid Cancer, and David, living in Sydney Australia, who is living with Stiff Person Syndrome.  Join us in this insightful conversation as we hear how their different rare conditions affect their...

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.