MPN Voice

The video of the MPN Voice patients’ virtual forum, held on 11 September 2024, is now available to view! 🎥✨ This online forum focuses on skin cancer and features insightful presentations from: Dr. Jonathan Lambert, Consultant Haematologist, UCLH, London Dr. Elizabeth Kulakov, Consultant Dermatologist, UCLH, London Plus, don’t miss the engaging Q&A session chaired by Prof. Claire Harrison, Guy’s & St Thomas’ NHS FT. 🔍 INFORMATION CONTAINED IN THIS VIDEO WAS CORRECT AS OF 11 SEP 2024 Find our YouTube channel via the link in our bio or here: https://linktr.ee/Mpnvoice

Join us for the MPN Voice Virtual Forum on Myelofibrosis! 🗓️ Date: Wednesday, 16 October 2024 🕟 Time: 4:30 – 6:00 pm (BST) 🌐 Streaming Live Online REGISTRATION NOW OPEN! We are excited to announce our upcoming MPN Voice virtual forum on Myelofibrosis (MF). This event will feature insightful talks from leading experts: Dr. Andrew McGregor, Consultant Haematologist, Newcastle-upon-Tyne NHS FT Dr. Donal McLornan, Consultant Haematologist, UCLH, London Dr. Alesia Kahn, Consultant Haematologist, Leeds Teaching Hospital Trust Plus, hear a powerful story from a patient speaker sharing his MPN journey. How to Attend: Register Now – Registration is required to attend this virtual forum. Receive Zoom Link – After registering, you will receive an email with the Zoom link to join the forum. Please note, that this is an online event and cannot be attended in person. Don’t miss this opportunity to gain valuable insights and connect with the MPN community. Register today and be part of this important conversation! 🔗 Register via here - https://linktr.ee/Mpnvoice

REGISTRATION NOW OPEN! Join us for the Living with MPNs Day in London! This all-day event offers in-person attendance or live streaming. Hear from leading experts, share experiences with others, and learn about the latest news on MPNs. Key highlights: Expert presentations on MPNs, symptoms, trials, and treatments Q&A sessions for in-person and online attendees Breakout groups for patients, young people, and families Complimentary refreshments and lunch Don't miss out! Register now: via the link in our bio or this link - https://linktr.ee/Mpnvoice Venue: The Cavendish Conference Centre, London Date: 16 Nov 2024 Time: 08:45 AM - 4:00 PM

MPN-SVT is a rare condition where blood clots form in abdominal veins (splanchnic vein thrombosis) due to chronic bone marrow cancer (myeloproliferative neoplasm). In the UK, there are between 500-800 people with this condition. Death can result from underlying bone marrow cancer in 50% of patients and from gut or liver failure in others. Prompt treatment of the clot is essential to prevent fatality and improve long-term outcomes. Patients face lifelong challenges related to clots, bone marrow cancer, and liver and intestinal symptoms. Care pathways are complex and variable, with patients managed by multiple teams across different institutions. In 2023, researchers at Faculty of Nursing, Midwifery & Palliative Care, Royal Free Hospital and the University of Surrey conducted the first study to document the experiences of those receiving and delivering treatment for MPN-SVT. The study was funded by MPN Voice and part-funded by the Royal Free Charity. The film presented here is made up of interviews with individuals diagnosed with MPN-SVT within the last five years, recruited from three London tertiary referral hospitals and one district general hospital in South-West England. These participants generously shared their stories, highlighting key moments that significantly shaped their journey with MPN-SVT. Their insights provide valuable information for improving current practices and developing services. This film represents Phase 1 of our project, which involved gathering insights from people with MPN-SVT and their clinicians. Phase 2 will commence in the summer of 2024 and will focus on co-designing new resources and care processes with people with MPN-SVT and their clinicians to enhance the experiences of those living with the condition and improve the services provided to them. A copy of the study report and link to the video can be found here- https://linktr.ee/Mpnvoice #bloodcancerawarenessmonth #splanchnicveinthrombosis

MPN Awareness Day 2024 September is Blood Cancer Awareness Month when numerous blood cancer charities and patient organizations unite to raise awareness about blood cancers. This month-long campaign engages patients and healthcare providers through various activities, webinars, and forums. The 12th annual MPN Awareness Day is on Thursday, 12th September. This special day brings the global MPN community together to reflect, promote well-being for patients and caregivers, and raise awareness about Myeloproliferative Neoplasms (MPNs). Many of you have again requested materials to highlight common MPN symptoms. To mark MPN Awareness Day, we’ve created a new graphic for you to share. Please consult your doctor if you are concerned about these or any other unexplained symptoms. For more detailed information about MPNs, visit the MPN Voice website. What will you do today to help shine a light on Blood Cancers and their symptoms? Don’t forget to share! #bloodcancerawareness

People with polycythaemia vera (PV) produce more red blood cells than normal. PV may also affect the production of your other blood cells, for example, your body may produce too many platelets and white blood cells. Recent research shows that nearly 97% of people with PV have a mutation (or change) in a protein called JAK2, which is part of the mechanism that regulates blood cell production in our bodies. PV is considered a rare disease. The number of people diagnosed each year with PV will be two cases per 100,000 and is more common in men than women. It primarily affects middle-aged and elderly people, and it is less often diagnosed in children. In the early stages, PV patients may not exhibit any signs of the disorder but as the condition progresses a patient may exhibit some of the following symptoms: • Redness of skin (plethora) • Blurred vision and headaches • Bleeding and/or clotting • Skin itchiness (pruritus) • Joint pain or gout • Dizzy spells • Fatigue • Unexplained weight loss • Shortness of breath • Chest pain • Fullness/bloating in the left upper abdomen due to enlarged spleen. People with PV are at a high risk of blood clots (thrombosis) and bleeding (haemorrhagic) events. The chance of bleeding and clotting complications of PV can be reduced with medication to reduce blood stickiness and lower the red blood cell/platelet counts. Clotting episodes appear more common than bleeding episodes with more serious consequences. As it’s sometimes helpful to hear other people’s experiences with chronic conditions. MPN Voice #MPNVoice #bloodcancerawarenessmonth #RareBloodCancers #myeloproliferativeneoplasms #polyythemiavera

Meet the MPN 10 created by MPN Voice & Novartis UK! 🎨 This September, we're marking #BloodCancerAwarenessMonth with an immersive AR experience. Join us at the University of Glasgow Advanced Research Centre to see the giant number sculptures designed by talented mural artists. These sculptures represent the 10 most common symptoms of myeloproliferative neoplasms (MPNs), a group of rare blood cancers. What to expect: Giant number sculptures: Each sculpture is uniquely designed and represents a specific MPN symptom. AR experience: Scan the QR code on each sculpture to interact with the characters and learn more about their symptoms. Educational information: Discover the signs and symptoms of MPNs and the importance of early diagnosis. You can see the sculptures and experience the AR until September 22nd. They will then be moving south, so stay tuned for their next location. Have you seen them yet? More here - https://lnkd.in/eZ_mSCRe

Wondering about the numbers outside the ARC? 🤔 To acknowledge #BloodCancerAwarenessMonth we are hosting an immersive augmented reality enhanced art exhibition dedicated to #MPN10 and #BloodCancerAwareness. The fantastic sculptures were created by five talented street artists from across the UK, in partnership with MPN Voice and Novartis UK. See it outside the ARC until September 22nd. #BloodCancerAwarenessMonth. Find out more: https://lnkd.in/emAGpUyu

Blood Cancer Awareness Month is upon us, and MPN Voice is ready to walk it out with YOU! Our annual Walk to Support Challenge is back, offering a chance to: 🚶🏼♀️Raise awareness for Myeloproliferative Neoplasms (MPNs). 🚶Support MPN Voice and the crucial work we do for the MPN community. 🚶🏾♀️Get active & help improve your health. We've been blown away by the incredible response so far! But don't wait! Sign up to secure your spot and ensure a smooth experience. Here's how to join our walking revolution: 💌Email fundraising@mpnvoice.org.uk with "Walk to Support Challenge" in the subject line and your name. 🎯📢Set your walking goal! It's your challenge, walk at your pace. 📢Spread the word! Get your friends, family, and everyone you know walking for MPNs. This walk is for everyone, anywhere! It's a chance to connect with the MPN community, boost your health, and make a real difference. So grab some friends or colleagues and sign up now... 📷I look forward to your pictures and updates...

Don't Miss Out! MPN Voice Virtual Forum on Skin Cancer Blood Cancer Awareness Month: Focus on Your Skin Health Join MPN Voice for a FREE virtual forum on Wednesday, September 11th, 2024, from 5:45 PM to 7:15 PM BST (UK time). What to Expect: Expert Talks: Hear from Dr. Jonathan Lambert, Consultant Haematologist, and Dr. Elizabeth Kulakov, Consultant Dermatologist, both from UCLH, London. Skin Cancer & MPN: Learn about the link between skin cancer and Myeloproliferative Neoplasms (MPN). Live Q&A: Submit your questions in advance or during the forum. Registration: Spots are limited! To secure your place and receive the Zoom link, register now via the link in our bio or here - https://linktr.ee/Mpnvoice Can't make it live? No worries! A recording of the forum will be available on the MPN Voice YouTube channel after the event. Important Note: This is a virtual forum and cannot be attended in person. While the panel will answer general questions, they cannot provide specific medical advice. Spread the Word! Share this post with your MPN community and family. Together, let's raise awareness about skin cancer!