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b"ONCE UPON A GENE - EPISODE 164\\nThe Clinical Pharmacist - Why They Are A VIP For Our Care Team and How We Can Get to Know Them - With NARS1 Rare Disease Mom - Rachel Heilmann\\nRachel Heilmann is a rare mom and founder of The Rory Belle Foundation, which was started in honor of her daughter who had NARS1. She's also a clinical pharmacist on a mission to make a difference for our kids and advocate for palliative care for rare families.\\n\\nEPISODE HIGHLIGHTS\\n\\nCan you tell us about yourself and your family?\\nIn my past life, I was a clinical pharmacy specialist. My daughter Rory Belle was born in October 2019 and she was hospitalized for failure to thrive. She was 8 months old when she was diagnosed with NARS1. My daughter passed away in February 2021 from NARS1.\\xa0\\n\\nWhat is a clinical pharmacist?\\nA clinical pharmacist is someone who works alongside care providers to help improve the care for patients. I was residency trained after pharmacy school to gain extra skills and expertise to practice to my fullest potential and to work with physicians and nursing partners to administer care.\\xa0\\n\\nHow do we as parents get you on our team?\\nInquire to see if there is a clinical pharmacist or clinical pharmacy specialist available at your facility to refer you to so you can ask any questions you have.\\n\\nWhen it comes to consent, what can be leveraged?\\nConsent is the golden seal of documentation when understanding your risks and benefits and providing protection for a prescriber and parents. I always tried to outline for the prescriber the benefit and risks of a medication for a patient to make conversations easier between the prescriber and the patient. As a parent, if you have documentation for drug repurposing, provide that data and ask the prescriber what the concerns are and open up the conversation so that you can balance benefits and risks. And if needed, ask if there's a clinical pharmacist available to add to the conversation.\\n\\nHow do we create awareness and make this a standard of care to have a clinical pharmacist on our team?\\nI think the first thing is to ask for the resource when you're at appointments. I'd like to see more legislative efforts. There are states that leverage their pharmacies to work under protocol that allows them to practice more freely. With the pipeline of therapies coming out, like gene therapy and repurposing with FDA labeling, these things need to be handled in a deliberate fashion. If you keep asking, people will start partnering.\\xa0\\n\\nWhat advice do you have for families?\\nThe most important takeaways are not to take no for an answer and ask your doctor to connect you with a clinical pharmacy specialist if you need help pushing conversations forward.\\n\\n\\nLINKS & RESOURCES MENTIONED\\nThe Rory Belle Foundation\\nhttps://www.therorybellefoundation.org/\\nVarient App\\nhttps://www.varientapp.com/\\n\\nTUNE INTO THE ONCE UPON A GENE PODCAST\\nSpotify\\nhttps://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7\\nApple Podcasts\\nhttps://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347\\nStitcher\\nhttps://www.stitcher.com/podcast/once-upon-a-gene\\nOvercast\\nhttps://overcast.fm/itunes1485249347/once-upon-a-gene\\n\\nCONNECT WITH EFFIE PARKS\\nWebsite\\nhttps://effieparks.com/\\nTwitter\\nhttps://twitter.com/OnceUponAGene\\nInstagram\\nhttps://www.instagram.com/onceuponagene.podcast/?hl=en\\nBuilt Ford Tough Facebook Group\\nhttps://www.facebook.com/groups/1877643259173346/\\n\\nInterested in advertising on Once Upon a Gene? Email advertising@bloodstreammedia.com for more information!"