My Name'5 Doddie Foundation’s Post

Yikes. Let me get this straight. Nonprofits are making too much money from this? Not pharma. 🤑 🤪 Pharma needs more money?? The peanut gallery criticism of 340B hospitals defies logic and common sense. If you stand on your head and hold your nose, and disregard common sense, then consider where this money should go to best help underserved communities … Should the money go to providers delivering care in tough places? Or should more money go to pharma? Those are the two choices in the imperfect world of drug pricing and 340B. The money either goes to fatcat pharma or to healthcare providers taking care of underserved populations. Nobody else is caring for these patients. Nobody. So you can play analytics statistics games and criticize non-profits - and I can agree that they are inefficient and have lots of room for improvement - but they are the ONLY ones caring for these patients. Can non-profits do better? Yes. Does pharma need more money and non-profits need less? No. That’s the simple math.

Do you know someone that has the CRB1 gene mutation? If so, show them this post so that can talk with Kristin.

My firm belief: When considering treatment options for rare eye diseases, families and individuals impacted by blindness/low vision should make decisions based on education, not desperation. And it is up to the leaders of the community to make that education a priority. I consider that one of my top priorities as CEO of the Curing Retinal Blindness Foundation (CRB1.org), which is why I am dedicating a ton of time this year to being that resource I desperately needed 24 years ago. Social media posts, email messages, and an annual conference are great - but getting to actually talk with people that were walking my walk a few steps ahead of me was the big game changer for me and my family. I have been chatting with other patient organization leaders and industry folks in this space about this topic for years... and I am thrilled that many folks are moving education of patient communities to the top of their priority lists now. If you are serving families impacted by CRB1, please share this info about our upcoming monthly calls with them. And if you have successful initiatives that are empowering and educating your patient community, I'd love for you to share them. #PatientOrganization #PatientCommunication #Education #Leadership #RareEyeDisease #RareDisease #ClinicalResearch #Research

Have you received an early diagnosis of Parkinson's Disease and found that it is a life-changing moment? While it may prompt a range of emotions and concerns about the future, one crucial aspect that can provide a sense of empowerment and security is estate planning. Discover what early estate planning can do for you on our website. #GWTrusts #WednesdayWisdom #Blog #EstatePlanning

Are you hysterical? Or are your health concerns routinely dismissed & ignored? Medical gaslighting occurs when healthcare professionals dismiss or trivialize a patient's symptoms, often leading to misdiagnosis or delayed treatment. Women, in particular, are disproportionately affected by this issue. Studies show that compared to men, women experience significantly longer wait times for diagnoses of critical conditions such as cancer and heart disease. Additionally, women are less likely to receive aggressive treatment for traumatic brain injuries and are often under-prescribed pain medications. This disparity not only underscores the prevalence of implicit biases in medical treatment but also highlights the urgent need for systemic changes within healthcare practices to ensure equitable and empathetic treatment for all patients. When you vote for your daughter, you're voting for her healthcare. You're voting for equal research, representation, and care for half our nation's population. You can learn more here: https://lnkd.in/ebiP-Guf #voteforyourdaughter 📑 NIH; Khan, Kianaat & Tariq, Noor & Majeed, Saima. (2024). Psychological Impact of Medical Gaslighting on Women: A Systematic Review. Journal of Professional & Applied Psychology. 5. 110-125. 10.52053/jpap.v5i1.249.; Women are calling out 'Medical gaslighting.' (2023, June). The New York Times. #WomensHealth #MedicalGaslighting #HealthcareBias #hysteria 

Today Long Covid Kids Charity, along with Long Covid Support, Long Covid SOS and those representing disabled people and families of the bereaved attended the UK Covid-19 Inquiry for the first day of Module 2 on Core UK Decision-Making and Political Governance. KC Antony Metzer presented the preliminary evidence that the government was made aware of the potential long term impacts of COVID-19 infection on the UK population - including that there was a potential risk to children and young people as far back as February 2020. However, it was the persistent and vocal advocacy of Long Covid groups that pushed for the monitoring of long term outcomes as well as guiding the need for ongoing healthcare provision for those that continue to be affected for years following infection. Baroness Hallet will hear testimony and evidence in the coming weeks to determine the answers to some key questions on whether more could have been done to safeguard the lives of 2 million adults and children from chronic illness and disability. You can watch the opening statements here - https://lnkd.in/ewHQNUbC See our press release here - https://lnkd.in/ee7mKimE Our thanks to Jane Ryan Bhatt Murphy for guiding us through this process. #ListenLearnHope #LongCovidKids #LongCovid #LongCovidRuinsLives

Important research findings here!

Have you received an early diagnosis of Parkinson's Disease and found that it is a life-changing moment? While it may prompt a range of emotions and concerns about the future, one crucial aspect that can provide a sense of empowerment and security is estate planning. Discover what early estate planning can do for you on our website. #GWTrusts #WednesdayWisdom #Blog #EstatePlanning

Quite interesting… People in the UK have until 23 June to opt-out of your GP data being accessed and sold (anonymously) by the NHS to third parties for research purposes. What’s funny, not funny, is also that all adults in England are now considered to have agreed to be an organ donor when they die unless they have recorded a decision not to donate or are in one of the excluded groups. I would happily donate organs if that would save someone’s life, but reading that ”if the organ is not transplantable, it can be used for research/education purposes” (of course with your or your family’s permission, the automatic opt-in is not valid for this one). I don’t think many people realise what a massive business this will become. Tissue and body parts, organs are sold for huge money. - opt-out donation means that everyone are considered donators - everyone thinks it is a positive thing - give consent —> donate organs —> whereof most can’t be transplanted? (*add a process step here for consent for using organs for research. Many people consent, because why not?) —> massively profitable business to the NHS…? Am I getting this wrong? (Please educate me) They’re be selling your health data, and they’re going to sell your body parts. I’d happily offer my ❤️ to save someone’s life. But I’m not sure personally if I want a pharma grad testing molecules on slices of it. It’s a slippery slope when so much money from organ and tissue sales can be made. https://lnkd.in/d87uwnZh

Last week was FII awareness week. Long Covid Kids is aware that parents and carers of children with Long COVID have faced or are facing allegations of FII. Read our latest blog which outlines how and why allegations of Fabricated and Induced Illness happens and what you can do if you are in this situation. #FII #longcovidkids #longcovid #awarenessweek #charity #charitywork #raisingawareness