Sobi CEE

We were honored to attend an enlightening seminar at the Swedish Embassy in Prague, focusing on the EU Pharma Package & the patient-centric perspective! ?? ? Our journey took us into in-depth discussions with stakeholders from across the ecosystem and we were privileged to absorb insightful presentations. Some highlights include: ?? Jenni Nordborg from The Swedish Association of the Pharmaceutical Industry, LIF shared the Swedish position and future pathways in "The EU Pharma Package – The Swedish Way Through the Industry Perspective," offering a Nordic view on the topic. ?? Tomá? Dole?al delved into the critical issue of "Availability of Orphan Drugs in Light of Legislative and Regulatory Changes in Europe," shedding light on this crucial matter. ???? Anna Arellanesova from ?AVO - Rare diseases in Czech republic focused on "The EU Pharmaceutical Legislation and Its Impacts on People Living with Rare Diseases," spotlighting the human aspect of regulatory changes. ?? This seminar was a convergence of minds with a shared goal of enhancing patient-centric care. A big thank you to all the presenters and participants for such an experience!?

?? This summer, a group of 8 men and 1 woman from Europe and the United States, including our inspirational young stars from CEE, ????Jost & ????Daniel, embarked on a breathtaking quest to conquer the highest peak in the Alps. Their common bond? ??Living with hemophilia or being parents to children touched by this condition. Together, they proved to the world that the word "impossible" holds no meaning and that the true limit is only in our minds. ?? The extraordinary journey was brought to life by the association Save One Life, Inc. and supported by Sobi - Swedish Orphan Biovitrum AB (publ). Their mission extended beyond the climb itself: to shine a light on hemophilia, inspire those affected to chase their dreams & and raise funds to fight against inequalities in access to care and support for those living with bleeding disorders globally. ?? We're thrilled to unveil the trailer for the documentary "Mountains We Carry; Mountains We Climb." This breath-taking preview offers an intimate look at the triumphs, struggles, and unwavering determination of these remarkable people. ??Get ready to be inspired, as the full story will unfold soon. Stay tuned and join us in applauding the unshakeable spirit of those who reach for the heights, no matter the odds.??? #rarestrength #ReimagineYourStory #haemophilia

??Diagnosis with a rare, life-long condition like paroxysmal nocturnal haemoglobinuria (PNH) can, at first, disrupt dreams and plans, and shatter ambitions and expectations. With the right medical support, a PNH diagnosis does not mean the end of dreams; schedules may need to adapt, but a balanced life is still possible. ??????Paul’s fictionalised story is based on a person living with PNH. For Paul, his symptoms and the shock of diagnosis initially disrupted plans for university. However, after sharing his ambitions with his healthcare team and a new approach to the condition, he graduated and is once again planning the law career he dreamed of. ?? ??Watch Paul’s full story here: https://lnkd.in/djvWAjVR #PNHawareness #rarestrength #StoriesOfStrength #PNH

??Let’s unite in support of those affected by PNH and their families. Together, we can bring about meaningful change!?? #PNH #rarestrength #Storiesofstrength

Reflecting on an Unforgettable EHC Conference in Sofia, Bulgaria!????? What an incredible experience it was to be part of the EHC - European Haemophilia Consortium (EHC) conference in Sofia. A standing ovation ?? to the Bulgarian Haemophilia Association for orchestrating such a phenomenal event alongside EHC. Your efforts truly shone through! The atmosphere was nothing short of magical, filled with warmth, positivity, and the promise of new beginnings. We were surrounded by a community of passionate individuals, each conversation deep and meaningful, every connection beautiful and lasting.? ??Our time in Sofia wasn't just about learning and sharing; it was about listening. We heard your stories, felt your challenges, and celebrated your triumphs. ??To our inspiring community of patients: your voices are the heartbeat of our mission. We promise to carry forward the invaluable wisdom you shared with us, ensuring that it resonates through every initiative we develop. Your voice matters—now more than ever. Let’s keep the momentum going! This is the Sobi way.?????? #sobi #rarestrength #haemophilia

??Turning Challenges into Dreams: ITP AWARENESS WEEK?? As we mark the last week of September for Immune Thrombocytopenia (ITP) Awareness,?let's shine a light on the incredible strength of those living with this rare disease.?ITP is a rare autoimmune disease where the immune system attacks platelets in the blood, leading to low platelet counts and an increased risk of bleeding.?? ???YOUR DREAMS MATTER??? ITP challenges the body, but it’s not just about low platelet counts. It’s about the strength to overcome and the courage to pursue your dreams. At Sobi, we're committed to focusing on the people behind the patients & we believe in the power of your dreams. Every day, we're inspired by the resilience of those who refuse to let ITP define their lives. Living with ITP can feel isolating, but know that you are not alone. Open dialogue with your healthcare team is more than a conversation—it's a lifeline. Our ITP Discussion Guide is here to help you express your needs and aspirations, ensuring your voice leads the way & your story is at the heart of every decision.?? ?Let's transform hope into reality and ensure that shared decision-making lights the path to your dreams. You are unstoppable: https://lnkd.in/dhShRBPp #Sobi #rarestrength #ITP #breakingdownbarriersinITP #rarediseases

????Gathering Minds, Shaping Futures in Zagreb! ?? We're thrilled to share that our dedicated colleagues from across CEE have gathered in Zagreb for the International Society on Thrombosis and Haemostasis (ISTH) in-person workshop on hemostatic disorders.?? This enriching three-day event has been filled with: ? Clinical education by preeminent voices in thrombosis and hemostasis. ? Wonderful networking opportunities with world-class experts, all in an intimate, small setting. It's been particularly inspiring to discuss the latest advancements in haemophilia treatment with such passionate experts and witness their enthusiasm for the innovations on the horizon. We take immense pride in overseeing the future treatment of haemophilia and catalyzing a paradigm shift, ensuring that our patients can truly enjoy more life in their years.? ??At Sobi - Swedish Orphan Biovitrum AB (publ), we do not follow; we lead. This is the Sobi way. #rarestrength #Sobi #ISTH

?? Reflecting on a Remarkable Experience: The 1st Cluster Meeting for Poland, Czechia, and Slovakia ?? ??Last days, the beautiful city of Wis?a in Poland hosted our inaugural Cluster Meeting in Wis?a, Poland. The event was centered around a compelling theme:?ONE TEAM.?? ??The motto ONE TEAM wasn't just a slogan; it was a guiding principle that infused every part of our gathering. From insightful discussions and workshops to engaging team-building activities, we demonstrated our collective energy and teamwork spirit. This event reaffirmed that together, we are not only more innovative but also more resilient and capable of achieving great things. ??We delved deep into conversations about the complexities of rare diseases, shared innovations, and discussed the unique healthcare environments and market access challenges in ????Poland, ????Czechia, and ????Slovakia. These discussions were fruitful and highlighted both our similarities and differences. ?The true value came from strengthening our relationships and embracing our ONE TEAM approach. We firmly believe this unity will further empower us to better fulfill our company mission – transforming the lives of individuals with rare and debilitating diseases. Together, we are stronger. Together, we are ONE TEAM. This is the Sobi way.?? #SobiCEE #rarestrength

REIMAGINE YOUR STORY ??Managing pain and joint health for people with hemophilia significantly impacts their ability to engage in everyday activities. ??Prophylaxis and maintaining adequate factor levels play a crucial role in preventing pain, bleeding, and microbleeding. The latter is particularly insidious because it often occurs without symptoms.?? ??Ensuring adequate protection helps maintain factor levels that enable those with hemophilia to improve their overall quality of life. Collaborating with the care team to understand the necessary level of protection against bleeds is a key step in enhancing patient wellbeing.???????? ??Discover more about how others have reimagined their stories by living active lives while limiting the impact of hemophilia: https://lnkd.in/dqcU3ne7 #Sobi #rarestrength #raredisease #haemophilia?#ReimagineYourStory

??We are thrilled to share that Sobi - Swedish Orphan Biovitrum AB (publ) in partnership with Save One Life, Inc. Foundation, has recently supported a group of individuals with haemophilia on an inspiring journey to conquer the summit of Mont Blanc in July 2024.????? ??The climb goes beyond a mere physical feat; our aspiration is for it to serve as a wellspring of inspiration for all individuals living with haemophilia, encouraging them to pursue their dreams and aspirations, regardless of size. ????Led by Chris Bombardier, Executive Director of Save One Life Foundation and the first person with haemophilia to conquer the Seven Summits, fellow climbers with haemophilia, including ????Daniel from the Czech Republic and ????Jost from Slovenia, took on the majestic Alps.???? ??This journey is not solely about reaching the summit; it is about touching hearts and sharing the experiences. Together, we are not just ascending a mountain; we are uplifting a community, one step at a time. ??Haemophilia is a rare blood disorder that impacts the blood’s ability to clot, placing those with haemophilia at risk of bleeding from modest injuries or even spontaneously. ??For Sobi, the Mont Blanc expedition and the mountain these climbers aimed to conquer symbolize the potential for individuals living with haemophilia to unlock their own personal opportunities and rethink their lives with haemophilia. ??Learn more about support and resources for people with haemophilia on our Liberate Life website https://liberatelife.eu/ ??For more details about the climb, visit the Save One Life Foundation: https://lnkd.in/dkvaWv-M #sobi #rarestrength #haemophilia #raredisease #SaveOneLife