Our new podcast episode "Living with Gaucher Disease in Central Latin America" is in Spanish language and was realised thanks to Maria Alejandra Tornero (Argentina), a Gaucher Leader in the IGA, Dr Gustavo Kantor (Argentina), Ricardo (GD patient from Argentina), Rigoberto (GD patient from Guatemala), Marta (mother of Candy-GD patient from Guatemala, Augustin (young GD patient from Argentina), Alexandra (GD patient from Peru), Elsa (mother of Jacqueline – GD patient from Guatemala), Emilse (GD patient from Argentina), Veronia (mother of Ezequel – GD patient from Argentina). They talk about their journey to diagnosis and treatment. Every story is heartwarming, and it shows why is it important to have patient organisations who fight for better quality of life of families with Gaucher disease. If you would like to see the translation, please click on the following link to read it in English: https://gaucheralliance.org/gaucher-voices-living-with-gaucher-disease-in-central-latin-america/ _____________________________ Nuestro nuevo episodio del podcast "Viviendo con la enfermedad de Gaucher en América Latina Central" está en español y fue realizado gracias a María Alejandra Tornero (Argentina), Líder de Gaucher en el IGA, el Dr. Gustavo Kantor (Argentina), Ricardo (paciente con EG de Argentina), Rigoberto (paciente con EG de Guatemala), Marta (madre de Candy, paciente con EG de Guatemala), Agustín (joven paciente con EG de Argentina), Alexandra (paciente con EG de Perú), Elsa (madre de Jacqueline, paciente con EG de Guatemala), Emilse (paciente con EG de Argentina) y Veronia (madre de Ezequel, paciente con EG de Argentina). Hablan de su trayectoria hasta el diagnóstico y el tratamiento. Cada historia es conmovedora y demuestra la importancia de contar con organizaciones de pacientes que luchan por una mejor calidad de vida para las familias con la enfermedad de Gaucher. To listen to the podcast on Spotify, please click here/Para escuchar el podcast en Spotify, haga clic aquí: https://open.spotify.com/episode/1nLd3Zs9KRnoEdCqmvZbSC?si=qek5_MhRSnyFYR0Nvu3GdA (fb)

Sharing some exciting news from our friends in the UK. Su from UK Gauchers Association writes: “On the weekend of 31st May to 1st June, The UK Gauchers Association were thrilled to welcome many of our UK nGD families, together with friends from the UK specialist centres and industry. Some special guests from abroad also joined us for the 11th Neuronopathic Gaucher Disease Family Meeting and it was fantastic to see so many familiar faces and welcome some new ones too and, as always, it was first a foremost a wonderful opportunity for everyone to reconnect and catch up. Saturday morning kicked off with a Family Fun Education session for the whole family. The room was split into 3 areas – a Cell Station, a Genetics Station and a Brain Station. It was a fantastic way for both adults and kids to learn more about the biology, genetics and brain involvement of nGD in fun and practical ways including making DNA out of sweets, thinking about how the functions of a cell are like the key functions of a town centre and using braille and a game dice to think about the brain and how it works. Once the kids headed off for a day full of activities, the rest of the day included sessions on: - new therapies and research in nGD - the natural history learnings in nGD and how they can be used to improve care going forward - transition from paediatric to adult care for younger families and Independent Living for adult patients and their families / carers - audiology in nGD There was also an inspiring personal story from Radhiker Dhayatker. Everyone had a chance to let their hair down on Saturday evening and the group enjoyed a fabulous dinner. Sunday morning saw the group split into teams to battle it out in the Gaucher Grand Quiz. We then had a reintroduction to the mental health and counselling service, rareminds, which can be accessed by patient and families in the UK via the Association and everyone then split into smaller groups for private space to talk sessions. A wonderful weekend was had by all with interesting and informative sessions, inspiring stories and most of all good times altogether.” (fb)