JDRF International’s Post

#Sepsis is one of the leading causes of patient harm. It is often misdiagnosed and can have tragic consequences. This #SepsisAwarenessMonth, we join NPSB Advocacy Coalition Member Sepsis Alliance in raising awareness and calling for action to improve #patientsafety. A National Patient Safety Board will help to prevent misdiagnoses and will save lives. Learn how you can help at https://hubs.li/Q021v2Tz0 #SAM2023

Sepsis early diagnosis leads to early treatment and saves lives

In our awesome country the unreasonanable overpricing of life sustaining and life improving drugs like insulin; 7 - 10 times more than the same insulins cost in Canada, western Europe, Australia, Japan, etc. are forcing up to 25% of the people who use insulin to skip injections and/or ration their insulin along with other health and life improving diabetes medicines. With over 100 years of clinical experiences using insulin we understand that not having any insulin can be deadly for people with T1 diabetes and rationing insulin does greatly increase the chances of people with diabetes developing more serious, far more expensive complications of diabetes. Ensuring that people with diabetes can afford and have access to their prescribed diabetes medicines, including insulin, directly supports the improved health and productivity of the 38 million people that live with DIABETES in our country. This will allow millions of additional people with diabetes to be healthier and more productive and at the same time make it possible for them to avoid the serious, far more costly complications of diabetes. Ensuring affordability and access is the wisest health and business investment our country can make to realize healthier, more productive lives for 38M people with diabetes, their families, and our country!

In 2022, 9.3% of adults in Florida reported that they currently have asthma. As supporters of the Florida Asthma Coalition, we aim to ease the burden of asthma on all individuals. Through education and advocacy, the Florida Asthma Coalition is reducing disparities among those affected by asthma, increasing awareness of early detection, and more. #FloridaAsthmaCoalition #AsthmaEducation

Rare Disease Week I know this is Washington DC but Rare Diseases are not a uniquely American Concept They affect people all around the world in every country, rich or poor. Friedreichs Ataxia is a particularly frustrating condition. We know so much about it. -->>The gene -->>The chief symptoms. It is progressive - ie it gets worse as you get older which is horrible to deal with as you have to deal with a constantly moving target. The only thing you know is that it gets worse and it affects every part of your life. For most people it kicks in around the time you are hitting puberty -->>Normal issues ++++++ Some people deal with it by becoming the center of everyone's attention. Others retreat into their shell Disabled and depressed. What can everyone else do? Something simple is often enough. -->>"Take me out for a cup of coffee" Or -->>"lets go window shopping for an hour or two" It does not take much to constitute the highlight of their day, week, or even month. And you can double that up; there is a carer: Husband, Wife, Daughter, Son, Father, Mother, Brother, Sister, Significant other, or fantastic Friend, who is also able to concentrate on something else for an hour or two. They will spend the whole time worrying but that goes with practice. If you cannot do this, raise money or awareness or preferably both Ataxia UK | Friedreich's Ataxia Research Alliance (FARA) | Ataxia Foundation | Ataxia Ireland (AFI) | fara Australia - Friedreich Ataxia Research Association

One of the best ways to make #IBDvisible during #CCAwarenessWeek is to take action. The U.S. Department of Health & Human Services is appealing the federal court decision on co-pay accumulators that could have saved IBD patients thousands of dollars per year. We need YOU to sign-up as an advocacy volunteer and help us fight for IBD patients. You don’t need any knowledge of advocacy, policy, or IBD issues to participate. Take action here: https://bit.ly/3N8YTwr

April marks Parkinson's Awareness Month, a time to unite in support, education, and advocacy for those living with Parkinson's disease. Let's spread awareness, foster understanding, and empower individuals and families affected by this condition. Together, we can make a difference. 💙🧠 #tennesseehealthadvocates #medicalbills #patientadvocate #ParkinsonsAwareness #UnityInAction #SupportAndEmpower

Advocacy and legislation are key to assuring a reasonable quality of healthcare support.

We sat down with Glenna Shen, Sobi VP of Corporate Affairs, and Caroline Kruse, Platelet Disorder Support AssociationSupport Association President and CEO to talk about the role that advocacy and support plays in the lives of rare disease patients and caretakers, as well as the significance of access to innovative treatments. Watch the full story on TheBalancingAct.com. #TheBalancingAct #BehindTheMystery #ITP