International Niemann-Pick Disease Alliance (INPDA)

🌟 Super Siblings Spotlight 🌟 In today’s feature, we’re sharing the heartwarming story of Natasha, whose brother, Renzo, is affected by Niemann-Pick type C. In this video, Natasha shares her journey as Renzo’s sister, describing how they bond, play, and support each other through their unique daily routines ❤️ Her story is a beautiful reminder of the powerful sibling connection that often forms an essential part of living with Niemann-Pick disease. Through their shared moments, Natasha brings light to the small joys and big challenges they face together every day. Let’s celebrate Natasha and all the incredible siblings who stand beside their loved ones, making every day brighter 🌈 ✨ 🎥 Watch Natasha’s story and help us spread awareness by sharing this post! #SuperSiblings #NiemannPickAwareness #NPC #FamilySupport #RareDiseaseCommunity #StrongerTogether

💚 Super Sibling Spotlight: Alejandro & Natalia 💚 This week’s Super Sibling is Alejandro, who shares fond memories of his sister, Natalia, who is affected by Niemann-Pick Disease. "Alejandro has always been a very good child, he gave her everything his sister asked for, and he continues to give it to her. Natalia loves to eat, and he gave her his cookies. He loved to take his sister and go to the kiosk his parents had to eat as many sweets as possible! Now Alejandro has grown up and knows everything about Niemann-Pick!", shared with us Alejandro and Natalia's mom. "Everything is achieved with effort and hope”, this is the message Alejandro wants to send to all the siblings and families affected by NPD. Thank you, Alejandro, for being such an amazing Super Sibling and for sharing your memories! #NiemannPickAwareness #SuperSiblings #NPDCommunity #INPDA

New Edition of the INPDA Newsletter 📧 We’re excited to share the latest edition of the INPDA Newsletter, packed with all the updates from Niemann-Pick Awareness Month! From inspiring stories to awareness initiatives, this edition covers it all. If you haven’t already, make sure to check it out https://lnkd.in/dbF3e2TS If you'd like to receive future editions directly in your inbox, simply send an email to maria.garrido@inpda.org to be added to our distribution list. #NiemannPickAwareness #INPDANewsletter #StayInformed

Super Siblings Spotlight – Federico 🧡 This week, we share another story from Federico, brother of Estefania. Federico speaks about how his sister was always full of energy before her Niemann-Pick type C diagnosis. He reflects on the difficult journey they faced, with several incorrect diagnoses due to the lack of knowledge about the disease at the time. As a sibling, it was a challenging process, but Federico remains committed to raising awareness in hopes of helping others receive an earlier and more accurate diagnosis. Join him in spreading the word 🌎 #SuperSiblings #NiemannPickAwareness #EarlyDiagnosisMatters

Reflecting on our INPDA Journey 🌟 As we continue to mark Niemann-Pick Awareness Month, we take a moment to reflect on our journey. From our very first Face-to-Face meeting in Edinburgh in 2009 to our most recent one in Tarragona in 2023, each gathering has strengthened our global network and commitment to supporting those affected by Niemann-Pick diseases. Check out this graphic, showcasing moments from every INPDA meeting throughout the years. Here’s to continued collaboration and progress as we look forward to the next one in Iguazu Falls in 2025! #NiemannPickAwareness #TogetherWeAreStronger

💚 Super Sibling Spotlight: Sara & Álvaro 💚 This week, we’re celebrating the incredible bond between Sara and her twin brother, Álvaro, who is affected by Niemann-Pick. "Sara is a dedicated sister to her brother. They are twins and have always been together for everything, wherever Álvaro goes, Sara is there! It is difficult for her to express her feelings, but she shows them in her daily life, helping all the people she loves, especially her brother. Together with her entire class, Sara created a book of poems about history, 74 poems that tell Spanish history from prehistory to the contemporary age. When it came out, each child in the class had to choose a small association to which money from sales of the book would be donated. This is where Sara began the fight for her association to emerge as the winner and got the ANPF to be among the 6 finalists...” shared her mom. Thank you, Sara, for sharing your journey with us! Your connection with Álvaro is truly special 🌟 #NiemannPickAwareness #SuperSiblings #NPDCommunity #INPDA #TwinBond

🎥 Watch the Highlights from Niemann-Pick Disease Awareness Day 2024! We are excited to share the highlight reel from the first-ever Niemann-Pick Disease Awareness Day, hosted by AIIMS, India. This event brought together patient families, medical experts, researchers, and policymakers to raise awareness and advance efforts in the fight against this ultra-rare disease. 🌟 From powerful personal stories to expert insights on medical advancements and advocacy work, this reel captures the essence of what we’re all working toward: a future where no family has to face Niemann-Pick Disease alone. 🙏We are deeply grateful to Dr. Neerja Gupta and Dr. Madhulika Kabra for hosting and uniting the Niemann-Pick Disease (NPD) community. Our heartfelt thanks also go to Dr. Ratna Puri, Dr. Sunita Bijarnia, Dr. Mamta Muranjan, Dr. Meenakshi Bhat, and Dr. Sheela Namboothiri for their invaluable contributions in raising awareness and deepening our understanding of NPD. A special thanks to the Health Ministry representative for dedicating time to listen, engage with the families, and thoughtfully address their concerns. Your support is making a difference. All families who traveled from various locations to be part of the program. Our NPD volunteer families who spent hours bringing this together. We thank Sanofi India Ltd for being present and supporting us through the event. https://lnkd.in/ggcifSj9 #NiemannPickAwareness #RareDiseaseDay #PatientAdvocacy #RareDiseasePolicy #HopeAndCure #TogetherWeFight #Niemannpickindia #ASMD International Niemann-Pick Disease Alliance (INPDA) Lysosomal Storage Disorders Support Society (LSDSS) - India Sanofi India Ltd

💙 Meet Avery Hopkin, one of our incredible Super Siblings, who shares what life is like alongside her sibling. In this touching video, Avery opens up about their journey together—the highs, the challenges, and the beautiful moments they’ve shared. She also reveals one of her favourite memories, a special moment that perfectly captures the unique bond they have. As Avery shares on the video, "...for new siblings maybe like — just having access to other siblings, being able to talk with them, was really big for me, when I was younger. When they are first joining the community, having that access, like just knowing there are other siblings out there that they are able to talk to..." Watch Avery’s story and join us in celebrating the love, strength, and resilience of our Super Siblings 💪💖 #SuperSibling #NiemannPickAwareness #FamilyLove #StrengthInCommunity

💛 Today, we mark Niemann-Pick Diseases Awareness Day, a day dedicated to raising awareness and showing support for all those affected by Niemann-Pick diseases around the world. Niemann-Pick is a rare, genetic condition that impacts not just those diagnosed but also their families, friends, and communities. Today, we come together to honour their strength, resilience, and hope 🌍 We encourage you to join us in spreading the word about Niemann-Pick diseases and the importance of early diagnosis, research, and community support. Whether you’re a family member, friend, healthcare provider, or ally, your voice helps make a difference. Let’s continue to advocate for increased understanding and resources for all those affected🧬💜 #NiemannPickAwareness #NPDawarenessDay #SupportTheFight #Community #Hope

🌍✨ Think Again. Think NPC - a global effort to bring Niemann-Pick type C into the spotlight! We’re proud to share the Think Again. Think NPC campaign, led by the International Niemann-Pick Disease Alliance (INPDA), which unites non-profit Niemann-Pick patient organizations worldwide. This groundbreaking initiative aims to reduce the time it takes to diagnose NPC by raising awareness among healthcare professionals who may not yet recognize its key signs and symptoms. By encouraging medical professionals to Think Again. Think NPC, this campaign strives to expedite diagnosis, allowing patients faster access to crucial treatment and support 💜 Explore more about this important campaign on the Think Again, Think NPC website and join us in spreading awareness: #ThinkAgainThinkNPC #NiemannPickAwareness #NPC