Pulse Infoframe - Podcast Details

Shows

Zitten Met Henk Zitten Met Henk 55 - Stefan Tabak - Infoframe Zitten Met Henk 55 - Stefan Tabak - Infoframe Vandaag in Zitten Met Henk: Stefan Tabak, de man die jongeren een kans geeft en alles doet voor een duurzame toekomst. Stefan Tabak is een gedreven jonge ondernemer met een bijzonder verhaal. Een paar jaar geleden nam hij het bedrijf Combico over van Wytze Medendorp en blies het nieuw leven in. Nu gaat het bedrijf verder onder de naam Infoframe, en Stefan heeft grote plannen voor de toekomst. Duurzaamheid, hergebruik en betrokken ondernemen Infoframe is meer dan alleen een bedrijf. Het is een plek waar duurzaamheid en hergebruik centraal staan. Maar...

2025-01-3037 min

Real Talk, Real World Data Sarita Edwards- Trisomy 18 Patient Advocate and MotherApril is Trisomy awareness month so we want you to hear from one of the most out-spoken patient advocates in this space, Sarita Edwards. Sarita is the co-founder of the E.WE Foundation, a charity with the goal of supporting families with a loved one diagnosed with Trisomy 18. Before that she had a son Elijah, who was born with this condition. At the time of Elijah's diagnosis, very little was known about Trisomy 18 and it was deemed incompatible with life with a life expectancy of only 2 years which resulted in some challenges in getting the proper care. Elijah is...

2023-03-1025 min

Real Talk, Real World Data Dr. Scott Ernst & Dr. Femida Gwadry Sridhar- The Global Melanoma Research NetworkBack in 2013, Dr. Scott Ernst and Dr. Femida Gwadry-Sridhar both recognized some problems with the way people were conducting research for melanoma. Collaboration was lacking and crucial patient data was being siloed and not shared amongst the research community, which prevents the full potential of this data from being realized. The two teamed up to create the Global Melanoma Research Network (GMRN). The first collaborative research network for melanoma and worked alongside different cancer centers across Canada begin collecting, centralizing and standardizing their melanoma patient's data. Today, the registry has grown to be one of the largest m...

2023-01-1926 min

Real Talk, Real World Data Dan ShockleyA positive mindset is one of the keys to living a happy life. But maintaining optimism in the face of adversity is much easier said than done. Especially when that adversity comes in the form of a rare medical condition diagnosis. However, our guest Dan “Dry Dock” Shockley is here to show you how he stayed positive throughout his battle with colorectal cancer. Dan received his diagnosis following a colonoscopy shortly after his 50th birthday after retiring from a long career in the Navy. Dan immediately shifted his focus to advocating for the colorectal cancer community and became a live...

2022-11-1131 min

Real Talk, Real World Data Tracy Dixon-SalazarMotherhood is one of the greatest experiences in a woman's life, but it comes with many challenges. These challenges only become greater when your child lives with a rare disease. Neuroscientist, geneticist, patient advocate, and Executive Director of the LGS Foundation Tracy Dixon-Salazar experienced this first hand when her daughter Savannah was diagnosed with a severe form of epilepsy called Lennox-Gastaut syndrome (LGS) at the age of 5. Desperate to learn more about her daughters condition and how to manage it, Tracy went back to college and took classes while her children were at school. After 12 years of studying, Tracy...

2022-08-3133 min

Real Talk, Real World Data Lori StrausIn this episode of "Real Talk, Real-World Data", Joshua is joined by freelance content writer and author Lori Straus. Lori has been writing content in the rare disease space for years and has contributed several articles to Pulse Infoframe. On top of her work as an author, Lori also lives with a rare form of epilepsy called Jeavons syndrome that she only recently was diagnosed with after years of uncertainty. Join us as Joshua and Lori break down some of the best practices for patient advocates who want to create compelling written content and discuss Lori's one of a...

2022-07-2622 min

Real Talk, Real World Data Ana MingoranceOn the third episode of "Real Talk, Real-World Data", Joshua is joined by Ana Mingorance. Since she was a child, Ana has had the goal of curing a disease. She carried this with her into adulthood and sits down to share some insights she has taken away over her 13 years in the industry. Ana is the founder and CEO of Singularity Bio, a biotech startup with the mission to make all complex conditions treatable by developing treatment to induce specific cell states to fight diseases. Prior to this role, Ana was the Chief Development Officer at the Loulou Foundation...

2022-06-2819 min

The Health Design Podcast Dan Dry Dock Shockley, Patient AdvocateRetired U.S. Navy, Operation Desert Storm; Enduring and Iraqi Freedom veteran and 10 year hereditary colon cancer WARRIOR. My purpose is to educate the medical community about AFAP, continuing the legacy of Dr. Henry T. Lynch, on the importance of early detection in hopes of saving lives. Dr. Lynch is credited w/discovering AFAP. He's the founding father of hereditary cancer research. I met him shortly after my diagnosis and successful total-proctocolectomy surgery. Dr. Lynch considered me a colleague through the years and was tracking my journey. My mantra is a positive spin on a bleak diagnosis: Always Forge Ahead...

2022-06-2028 min

Real Talk, Real World Data Dan & Patricia LewiIn the second episode of "Real Talk Real-World Data" our host Joshua Henderson is joined by Dan and Patricia Lewi. Dan and Patricia have become leaders in patient advocacy in the Tay-Sachs community after their daughter Amelie was diagnosed with this rare condition at a young age in 2011. Dan and Patricia started the Cure & Action for Tay Sachs (CATS) Foundation only three months after Amelie's diagnosis and have been instrumental in bringing the disease community together as well as supporting research efforts by establishing a global patient registry and European consortium for Tay Sachs. Dan is also the head...

2022-06-0622 min

Real Talk, Real World Data Becky PenderIn the debut episode of "Real Talk Real-World Data" our host Joshua Henderson is joined by Rebecca Pender to discuss the rare epilepsy space. Rebeca has a daughter who lives with multiple rare diseases and is also a dedicated Team and Communities Associate at Rare Revolution Magazine. Rebecca and Joshua discuss the diagnostic journey, the role parents play in this experience as well as the potential of real-world data and collaboration between healthcare providers and patients. This is the first installment in our series about rare epilepsy. Below are some topics covered in todays episode. Thank you for joining u...

2022-04-0634 min

Zitten Met Henk Zitten Met Henk 19 - Wytze Medendorp Combico LeeuwardenWytze Medendorp Een persoonlijk verhaal van ondernemer Wytze Medendorp Henk zit deze keer bij een maakbedrijf van magnetische wissellijsten, Combico. Hier wordt Infoframe gemaakt, dé magnetische wissellijst. Directeur eigenaar Wytze Medendorp kocht 10 jaar geleden het bedrijf nadat hij een advertentie op marktplaats tegenkwam. Het bedrijf dat toen nog in Franeker zat maakte alleen zeekaarten die ze in een beschermend kunststof frame plaatsten. Wytze zag hele andere mogelijkheden en ontwikkelde een magnetisch kliksysteem dat hij patenteerde. Het bedrijf uit Leeuwarden is sindsdien flink gegroeid dit ondanks een moeilijke start en de corona-crisis. Opnieuw een openhartig gesprek met een kl...

2020-09-1832 min

Talking HealthTech 27 - Femida Gwadry-Sridhar, Pulse InfoframeDr Femida Gwadry-Sridhar is the Founder and CEO of PulseInfoFrame; a company that builds collaborative communities to enable the best value healthcare and cures for cancer and rare diseases. As founder and CEO of PulseInfoframe, Femida has an extensive background as a pharmacist, epidemiologist and methodologist with over 25 years of experience in clinical trials, disease registries, knowledge translation, health analytics and clinical disease outcomes. Femida’s brain child is a cloud-based healthcare data insights solution called Healthie which is a state of the art analytics and visualisation platform built on the backbone of a dynamic registry. Healthie enables the integration of...

2019-12-0227 min

2019-12-0228 min