MapLight Therapeutics, Inc.’s Post

Now in its ninth year, National Organization for Rare Disorders State Report Card serves as a resource for patients, advocates, and policymakers to better understand how their state rates in areas of greatest need for the rare disease community. Major positive findings this year include: -Three more states signed RDAC legislation into law: Delaware, Indiana, and Maryland. This brings the total number of states with RDACs to 27. -Four states improved their overall grades in step therapy, meaning that residents of 40 states now have some type of step therapy protections in place to enable them to access the right treatment at the right time. Full report card in the link in the comments below 🔽 #raredisease #rarediseaseday2024

📢 Calling all advocates! 🚨 Join us and our partners Illinois Harm Reduction in Springfield, Illinois on April 17th, 2024! The statistics speak volumes: according to the Illinois Department of Public Health, there were 3,261 Opioid Overd*se De*ths in 2022, marking an 8.2% increase from 2021. It’s time for change! Our primary mission? Getting HB002 passed! Save the date, rally with us, and let's pave the way for a healthier, safer future. Register now at illinoisharmreduction.org. #CannaEquityIL #HarmReductionSavesLives #NoMoreDrugWar #HarmReduction

BREAKING NEWS: The National Plan to End Parkinson's Act has been signed into law! Today, we are thrilled to celebrate the enactment of the first-ever federal legislation dedicated to curing and preventing Parkinson’s disease (PD), and ensuring quality care for those impacted by this disease. What does this mean? Under the new law, the Secretary of Health and Human Services will carry out the National Parkinson’s Project to prevent, diagnose, treat, and cure PD, including the establishment of an Advisory Council, promoting the development of safe and effective treatments, improving early diagnosis and patient care, and more. Learn more at https://lnkd.in/e8KdhsAk #BreakingNews #ParkinsonsAct #NationalParkinsonsProject

📣 BREAKING NEWS: The National Plan to End Parkinson's Act has been signed into law! Today, we are thrilled to celebrate the enactment of the first-ever federal legislation dedicated to curing and preventing Parkinson’s disease (PD), and ensuring quality care for those impacted by this disease. What does this mean? Under the new law, the Secretary of Health and Human Services will carry out the National Parkinson’s Project to prevent, diagnose, treat, and cure PD, including the establishment of an Advisory Council, promoting the development of safe and effective treatments, improving early diagnosis and patient care, and more. Learn more at https://lnkd.in/ei3n5GqY #apdava #apdavirginia #nationalplantoendparkinsons #parkinsons #parkinsonsnews #virginiaparkinsons

Time is running out for the Food and Drug Administration’s rare pediatric disease priority review voucher program, Congress must reauthorize the program or it will sunset on September 30, 2024. The program provides incentives for innovative therapies for life-threatening rare pediatric diseases. Drug development for conditions treated in the NICU (BPD, NEC, ROP, HIE, among others) could be studied under this program. In an effort to save this program, Sens. Bob Casey (D-Penn.) and Markwayne Mullin (R-Okla.) and Reps. Mike McCaul (R-Texas) and Anna Eshoo (D-Cal.) have introduced the Creating Hope Reauthorization Act (H.R. 7384; S. 4583). Learn more about the program and the need for reauthorization from the National Organization for Rare Disorders (NORD) Congress: Reauthorize the Rare Pediatric Disease Priority Review Voucher Program - National Organization for Rare Disorders (rarediseases.org) TAKE ACTION: You can advocate for children with rare disease and their families by letting your members of Congress know what you think of this bill. Contact Your Member. Make sure to include the bill number in your communication (H.R. 7384; S. 4583). #pediatricraredisease; #PRV; #priorityreviewvoucher; #orphandrugs

Historic Milestone: The National Plan to End Parkinson’s Act was passed last week by the US Senate. This groundbreaking legislation will unite efforts to: - Prevent Parkinson’s: Establishing a national strategy to tackle the disease head-on. - Find a Cure: Accelerating research and development towards a cure for Parkinson’s. - Support Patients: Ensuring access to necessary care for those living with Parkinson’s. Reference: https://lnkd.in/dFRqQxqB #ParkinsonsDisease, #CureParkinsons

📣 BREAKING NEWS: The National Plan to End Parkinson's Act has been signed into law! Today, we are thrilled to celebrate the enactment of the first-ever federal legislation dedicated to curing and preventing Parkinson’s disease (PD), and ensuring quality care for those impacted by this disease. What does this mean? Under the new law, the Secretary of Health and Human Services will carry out the National Parkinson’s Project to prevent, diagnose, treat, and cure PD, including the establishment of an Advisory Council, promoting the development of safe and effective treatments, improving early diagnosis and patient care, and more. Learn more at https://lnkd.in/e8KdhsAk

Hospitals and health systems are trying to do their part to find a way out of our country's opioid crisis with opioid stewardship programs, but the challenge is complex. Learn how to implement, measure, monitor, and refine your opioid stewardship program here. https://lnkd.in/ePkrisHf? #opioidcrisis #patientsafety #opioidstewardship

Hospitals and health systems are trying to do their part to find a way out of our country's opioid crisis with opioid stewardship programs, but the challenge is complex. Learn how to implement, measure, monitor, and refine your opioid stewardship program here. https://ow.ly/vbfh50RhjbF #opioidcrisis #patientsafety #opioidstewardship

Tomorrow, the EULAR - European Alliance of Associations for Rheumatology Advocacy team is going to Brussels to better explain to the new MEPs and members of the EU Comission why it is so important that people with #RMDs and the professionals who care for them and investigate these diseases are taken into consideration to build a healthy and prominent Europe, and to tackle the RMD crisis: 1. One in five Europeans is affected by an RMD. 2. The largest cause of physical disability in the EU (over 50% of Years Lived with Disabilities (YLDs) in Europe). 3. Women and socio-economically deprived groups develop RMDs more frequently. 4. An economic burden of around 240 billion €/year and direct costs of 2% of the EU's GDP. 5. Our mental health is threatened by chronic pain and chronic inflammation, the leading symptoms of RMDs. 6. RMDs pave the pathway to other diseases that will ultimately kill us, like cardiovascular events and cancer; treating the RMD will avoid the development and the consequences of chronic inflammation. 7. We made incredible advances in the last 20 years; however, the health trends are devastating: chronic shortages of rheumatologists and rheumatology healthcare professionals, an ageing population and shrinking workforce, and negative lifestyle trends (an overweight population with reduced physical activity). We can improve this and make Europe free of the consequences of RMD with your help.