Bridge to Life Ltd.’s Post

Scientific societies in Turkey have gained a worldwide reputation for not giving any importance to the voice of the patient and not communicating with patient associations even though it is included in the disease guidelines. In fact, our physicians only celebrate each other on World Pulmonary Hypertension Day, whereas patients struggle with this disease for life. Rare disease day has no meaning for our scientific societies that only work on PAH. However, despite all the rudeness of our scientific associations, we are all honored that Pisana Ferrari, the hero patient of Pulmonary Hypertension diagnosed in 1988, #Pahriot (#Pahraman) and Secretary General of the Alliance for Pulmonary Hypertension, who was consulted as a model patient for patient opinion in the PAH guidelines prepared jointly by the European Society of Cardiology and the European Respiratory Society, was invited by the Transplantation Society (TTS) to the #TTS2024 Educational Workshop "Teaching the Transplant Teachers" to be held in our country in Istanbul as a lung transplant patient in 2002. I am very proud of her and I am very happy to have such a friend and fateful companion. I wish her continued success and I am glad to have you, Pisana. I would also like to thank the The Transplantation Society (TTS) for the value it gives to patients. Note: #Pahriot and #Pahraman are adjectives that Dr. Cihangir Kaymaz introduced to our literature. #AkciğerNakli #LungTransplant #PatientVoice #HastaSesi #OrganBağışı #OrganNakli #OrganBağışıHayatKurtarır #PulmonaryHypertension #PulmonerHipertansiyon #PulmonerArteriyelHipertansiyon #PulmonaryArterialHypertension #OrganDonation #OrganTransplantation #istanbul

Outgoing KGI President Dr. Sheldon Schuster recently moderated an enlightening panel at the 2024 National Organization for Rare Disorders (NORD) Living Rare Forum on "Rare Breakthroughs in Research and Care." The discussion featured Dr. Donald B. Kohn (UCLA, California Institute for Regenerative Medicine (CIRM) and Dr. Amanda Marinoff (UCSF Benioff Children's Hospitals), highlighting major advancements in treating rare diseases like severe combined immunodeficiency (SCID) and childhood leukemia. Key topics included stem cell transplants, precision medicine, and innovative immunotherapies such as CAR T-cell therapy. Watch the full video to learn how these breakthroughs are transforming lives: https://kgi.link/27y #RareDisease #MedicalInnovation #Impact #KeckGrad

"It is our hope that the combination of new empirical insights and ethical and legal guidelines presented in this issue offer a valuable framework for transplant professionals globally, be it to improve quality of patient care, to reduce inequity of access to transplantation or to reduce organ scarcity." The 𝘛𝘳𝘢𝘯𝘴𝘱𝘭𝘢𝘯𝘵 𝘐𝘯𝘵𝘦𝘳𝘯𝘢𝘵𝘪𝘰𝘯𝘢𝘭 𝘚𝘱𝘦𝘤𝘪𝘢𝘭 𝘐𝘴𝘴𝘶𝘦 on 𝗘𝘁𝗵𝗶𝗰𝗮𝗹 𝗮𝗻𝗱 𝗟𝗲𝗴𝗮𝗹 𝗔𝘀𝗽𝗲𝗰𝘁𝘀 𝗼𝗳 𝗢𝗿𝗴𝗮𝗻 𝗗𝗼𝗻𝗮𝘁𝗶𝗼𝗻 𝗮𝗻𝗱 𝗧𝗿𝗮𝗻𝘀𝗽𝗹𝗮𝗻𝘁𝗮𝘁𝗶𝗼𝗻 is a must-read for professionals in the field. This issue provides a comprehensive overview of the current landscape, covering topics from ethical considerations in deceased and living donations to the impact of cultural and religious beliefs. Let's strive to overcome these challenges and enhance organ donation practices worldwide. #EthicalChallenges #HealthcareInnovation #PoweredByESOT with authors Frederike Ambagtsheer, Coby Annema, John Forsythe, Nichon Jansen, David Paredes-Zapata

Patient Centricity in Clinical Trials are vitally important! Read Iris Karry's article from Colorectal cancer Canada in our digital magazine! https://lnkd.in/gNPEG9qM #patientadvocacy #patientcentricity #colorectalcancercanada #healcanada

As we near the end of Antiphospholipid Awareness Month, take a moment to delve into the world of thrombosis and Antiphospholipid Syndrome awareness. 🔗 https://lnkd.in/eAjdh2Hh Watch now and gain insights from @Dr. Stephan Moll, a renowned hematologist and thrombosis specialist as he provides a comprehensive overview of Antiphospholipid Syndrome (aPS), addressing topics such as testing for antiphospholipid antibodies (APLA), valuable references for clinicians, and essential patient advocacy groups. For a deeper understanding of laboratory testing for aPS and patient experiences, don't miss the enlightening discussion available on YouTube. #APS #APSawareness #Lupus #Awareness #Stago #supportgroups #miscarriages #Thrombosis #antiphospholipidsyndromeawareness #education #awareness #pregnancyloss #anticoagulants #advocacy #awarenessmonth #Stroke #antiphospholipidsyndrome #NationalBloodClot #ApsFoundationofAmerica

Well, some people just can't resist making an exit with a bang—literally. - The article discusses the manner in which individuals pass away, contrasting peaceful deaths with more dramatic and less graceful ones. - It highlights the social perceptions and emotional responses elicited by different types of death. - The piece also delves into the broader implications these perceptions have on society's overall attitude toward mortality. #Death #Society #Mortality #TPMC https://lnkd.in/g-vCz5az Author: Knowable Magazine

A qualitative exploration of perceptions and experiences around Long Acting Injectable ART in USA. Fascinating findings about psychological benefits of injectables with of course other expected ones such as convenience. https://lnkd.in/gupbqGPM

From the development of a weekly HIV treatment to an innovative approach to clinical trial enrollment, each week we highlight five things happening in life sciences.

From the development of a weekly HIV treatment to an innovative approach to clinical trial enrollment, each week we highlight five things happening in life sciences.

CBC Windsor's Josiah Sinanan broke the news yesterday that a study will be undertaken to investigate #BreastCancer among border workers. I was happy to share my insights garnered from the women I interviewed from the Ambassador Bridge for my PhD dissertation on this issue. I know I will be one of many keeping a close eye on study design and analysis given too often small cohorts are written off as not statistically significant. Whatever the research conclusions, diesel exhaust is carcinogenic and these workers have high levels of exposure - prevention is key for health and justice and there are solutions (electric trucks, green spaces, alternative transportation modes etc.) but we need the political will to address #AirPollution and a shift in values from profit to people Listen: https://lnkd.in/gs6nPw6B Read: https://lnkd.in/gmhQ6Jsi Canadian Association of Physicians for the Environment (CAPE)