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Living Fully With Fop More Than A Diagnosis Youtube

Leo Migdal
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living fully with fop more than a diagnosis youtube

Registered Charity in England and Wales #1147704 Every FOP journey begins with questions — but it doesn’t have to end there. In this moving video, Carli Henrotay (lives with FOP), Kathleen Degenhardt (lives with FOP) and Patty Pinkham (FOP parent and caregiver) share what it’s like to live with a disease few doctors recognize —... This video is part of the Share My Stories series for 2025 FOP Awareness Day. Thank you to our Platinum Sponsor, Regeneron Pharmaceuticals 👏 A special thank you to Carli, Kathleen and Patty for sharing your FOP journey with us ❤️ #FOPawareness With provider status now in effect in Wisconsin, pharmacists are getting recognized and reimbursed for the clinical care they’ve long provided.

As managing network facilitator for the Wisconsin CPESN, alum Abbigail Linde (PharmD ’11) is helping lead that change. She guides community pharmacies as they expand clinical services, develop collaborative practice agreements, and implement billing strategies to get reimbursed for sustainable, patient-centered care. “Here at CPESN, we help them transition into a model that’s focused on taking care of disease states in a comprehensive way," she says. Learn more about how she and other Badger pharmacists are putting provider status into practice to transform patient care: https://bit.ly/46PBmcO 🔇 Navigating the Patient-Professional Dialogue: Key Takeaways from #ESPKUConference2025 💬 One of the most impactful sessions at the recent #ESPKUConference2025 was 'Patients Meet Professionals', which brought to light crucial conversations around the experiences of... 💡👥 The core theme that emerged was the negative experiences many adults with PKU face within clinical settings.

⚠️🏥 Professionals in attendance were deeply moved by the patient testimonies, reaffirming their dedication and care for their patients. A powerful message resonated from the patient community: the desire to be seen and treated as individuals, as humans, beyond just their medical condition. This session underscored the vital need for enhanced communication between PKU clinics and their adult patients. 🗣️💬 Bridging this gap is essential for fostering a more supportive and understanding environment. 🌍💞 Beyond these critical discussions, the session also tackled the topic of clinical trials 🔬📊. A key focus here was on the need for better clarity regarding qualification criteria for studies and the importance of proactive patient information about trials.

This transparency is crucial for empowering patients. ATTC spotlight 🔍: Midlands and Wales Advanced Therapy Treatment Centre (MW-ATTC) The MW-ATTC aims to increase ATMP-specific PPIE activity to increase understanding of ATMPs and participation in trials. They aim to achieve this by: ✅ Raising public awareness of ATMPs ✅ Increasing equity of access to clinical trials ✅ Creating a patient charter for ATMPs Learn more: https://ow.ly/IwF750XcXJf #AdvancedTherapies #PatientAccess The 340B program was designed to expand access for patients in need. But today, big hospitals often purchase medicines at deep discounts through 340B, then bill patients at massive markups. Families shoulder higher costs while hospitals boost profits.

It’s time to bring accountability to 340B and ensure it delivers on its promise: helping patients, not enriching institutions. https://lnkd.in/evdDe7pf

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Registered Charity In England And Wales #1147704 Every FOP Journey

Registered Charity in England and Wales #1147704 Every FOP journey begins with questions — but it doesn’t have to end there. In this moving video, Carli Henrotay (lives with FOP), Kathleen Degenhardt (lives with FOP) and Patty Pinkham (FOP parent and caregiver) share what it’s like to live with a disease few doctors recognize —... This video is part of the Share My Stories series for 2025 FOP Awar...

As Managing Network Facilitator For The Wisconsin CPESN, Alum Abbigail

As managing network facilitator for the Wisconsin CPESN, alum Abbigail Linde (PharmD ’11) is helping lead that change. She guides community pharmacies as they expand clinical services, develop collaborative practice agreements, and implement billing strategies to get reimbursed for sustainable, patient-centered care. “Here at CPESN, we help them transition into a model that’s focused on taking car...

⚠️🏥 Professionals In Attendance Were Deeply Moved By The Patient

⚠️🏥 Professionals in attendance were deeply moved by the patient testimonies, reaffirming their dedication and care for their patients. A powerful message resonated from the patient community: the desire to be seen and treated as individuals, as humans, beyond just their medical condition. This session underscored the vital need for enhanced communication between PKU clinics and their adult patie...

This Transparency Is Crucial For Empowering Patients. ATTC Spotlight 🔍:

This transparency is crucial for empowering patients. ATTC spotlight 🔍: Midlands and Wales Advanced Therapy Treatment Centre (MW-ATTC) The MW-ATTC aims to increase ATMP-specific PPIE activity to increase understanding of ATMPs and participation in trials. They aim to achieve this by: ✅ Raising public awareness of ATMPs ✅ Increasing equity of access to clinical trials ✅ Creating a patient charter ...

It’s Time To Bring Accountability To 340B And Ensure It

It’s time to bring accountability to 340B and ensure it delivers on its promise: helping patients, not enriching institutions. https://lnkd.in/evdDe7pf