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Type 1 Diabetes Advocacy Groups

Diabetes Organizations

Diabetes Organizations

Stay up-to-date on current diabetes themes, proven therapeutic options, and knowledge resources and tools for you and your patients, and find detailed information on Novo Nordisk diabetes products. Since the launch of its first pen needle in 1985, Novo Nordisk has been committed to enhancing injection experience by putting technology in patient hands. NovoFine Plus is the latest example of that commitment. Find information on our treatment for chronic weight management in adults who are overweight with one weight-related comorbidity or obesity. Use this online medical resource to search for answers to frequently-asked questions about Novo Nordisk products or submit a question to our Medical Information team. Welcome to Novo Nordisk in the United States The organizations listed below can put you in touch with self-help, advocacy, and support groups whose members share your issues and concerns about diabetes. Though some of the groups listed below have received funding from Novo Nordisk they remain independent organizations. We cannot validate all of their content. American Association of Clinical Endocrinologists An organization dedicated to serving the interests of endocrine patients and the doctors who treat them. Continue reading >>

Diabetes Patient Advocacy

Diabetes Patient Advocacy

By Bennet Dunlap Father of Two T1 Kids and Diabetes Advocate (It is OK to Skip to the Shortcuts Below :-D) If you are on Garys email list, you know that learning to live with diabetes is not easy. We have all learned that just about everything makes diabetes care a little harder; activity, food, mood, attitude and more. It is an unwelcome addition to the list, but Ive got one more policy. Policy interacts with diabetes in many ways, at many levels. There are more than three dozen federal agencies that touch diabetes care, safety, access, and quality. State policy impacts schools, diabetes education, and even protocols to protect glucose testing from spreading infection in care facilities. Just as patient-healthcare teams create the best diabetes care, advocacy is the most successful when health professionals and patients work together. A Faster Cures white paper on health policy change says: The gold standard should be to have both scientific expertise and a group of patients who can speak both to the science AND the urgency needed to make change. Back to Basics Better policy happens when officials hear the real needs of constituents. But for many people who care about diabetes, learning the intricacies of advocacy is just one thing too many. That is totally fair. Somebody Needs to Make Diabetes Advocacy Shortcuts. Fortunately, the Diabetes Patient Advocacy Coalition (DPAC) can help. People who live with diabetes founded the Coalition with the goal of making policy actions easy. DPAC helps more voices speak on gaps in the diabetes policy landscape. The Diabetes Patient Advocacy Coalition works with the policy teams at the American Association of Diabetes Educators (AADE), American Association of Clinical Endocrinologist (AACE), and others. We write about advocacy with Continue reading >>

Diabetes Advocacy Alliance

Diabetes Advocacy Alliance

Our mission is to unite and align key diabetes stakeholders and the larger diabetes community around key diabetes-related policy and legislative efforts in order to elevate diabetes on the national agenda. The Academy of Nutrition and Dietetics (AND), formerly the American Dietetic Association, is the world's largest organization of food and nutrition professionals. AND is committed to improving the nation's health and advancing the profession of dietetics through research, education, and advocacy. For more information, visit www.eatright.org . The Diabetes Advocacy Alliance is working to increase awareness of, and action on, the diabetes epidemic among legislators and policymakers. We are a diverse group of patient advocacy organizations, professional societies, trade associations and corporations, sharing a common goal to defeat diabetes. Explore our site to learn more about what's on the front burner in our communications with Capitol Hill and the Administration. The Diabetes Advocacy Alliance (DAA) has public policy and legislative priorities in three areas: prevention of type 2 diabetes; improved screening and detection of those adults with prediabetes, undiagnosed diabetes, and gestational diabetes; and improved care for people whose diabetes has been diagnosed. A summary of DAA advocacy priorities is presented in this document: Advocacy Priorities in 2018 . Continue reading >>

From Individuals To International Policy: Achievements And Ongoing Needs In Diabetes Advocacy

From Individuals To International Policy: Achievements And Ongoing Needs In Diabetes Advocacy

From Individuals to International Policy: Achievements and Ongoing Needs in Diabetes Advocacy 1 Baylor College of Medicine, 1102 Bates Avenue, Suite 940, Houston, TX 77030, USA 2 Pennsylvania State University College of Medicine, 500 University Drive, HP-21, Hershey, PA 17033, USA 3 The diaTribe Foundation, 804 Haight Street, San Francisco, CA 94117, USA 4 Stanford University School of Medicine, 780 Welch Road, MC 5208, Palo Alto, CA 94305-5208, USA Marisa E. Hilliard: [email protected] ; Sean M. Oser: [email protected] ; Kelly L. Close: [email protected] ; Nancy F. Liu: [email protected] ; Korey K. Hood: [email protected] ; Barbara J. Anderson: [email protected] The publisher's final edited version of this article is available at Curr Diab Rep See other articles in PMC that cite the published article. Diabetes impacts tens of millions of people in the United States of America and 9 % of the worldwide population. Given the public health implications and economic burden of diabetes, the needs of people with diabetes must be addressed through strategic and effective advocacy efforts. Diabetes advocacy aims to increase public awareness about diabetes, raise funds for research and care, influence policy impacting people with diabetes, and promote optimal individual outcomes. We present a framework for diabetes advocacy activities by individuals and at the community, national, and international levels and identify challenges and gaps in current diabetes advocacy. Various groups have organized successful diabetes advocacy campaigns toward these goals, and lessons for further advancing diabetes advocacy can be learned from other health-related populations. Finally, we discuss the role of healthcare providers and mental/behavioral health professionals in advocacy Continue reading >>

Children's Diabetes Foundation Cdf Advocate Program - Children's Diabetes Foundation

Children's Diabetes Foundation Cdf Advocate Program - Children's Diabetes Foundation

People with type 1 diabetes between the ages of 2 and 22 Those who want to educate others about diabetes (its not contagious, you didnt get it because you ate too much candy, and cinnamon is not a cure!) Those who want to socialize with other kids with T1D Those who want to volunteer for a great cause and make a difference! Be willing to share your story about T1D in front of small/large groups or the media Have a positive outlook on T1D (of course, we all have our bad days, but a positive outlook can make all the difference) Complete a minimum of 20 hours of volunteer service at CDF events, the Barbara Davis Center, or the CDF office Commit to the CDF Advocate program for 1 year Get a parent or guardians permission- they will need to sign page 5 of the sign-up packet Youll get a free CDF tshirt and other swag- wear it with pride and it use it as a conversation starter about diabetes and CDF Education/Awareness booths in the Denver area Write thank you letters to major CDF donors Public speaking opportunities at CDF events Office assistant (mailings, lifting, general office work) Volunteer at CDF events (such as the Run for the Ring, basketball tournament, EPIC Diabetes Conference, and more!) Write a blog for the CDF website to be blasted on social media (younger kids can post a drawing instead) Spread diabetes awareness at your school/after school activities share your video/pictures with us! Visit the Barbara Davis Center for a full or half day to educate BDC patients about CDF. Youll also run contests and hand out CDF swag! Make crafts/write letters to newly diagnosed patients at the BDC Participate in CDF photo shoots/video tapings CDF Advocates will get together 3-4 times a year for fun outings with fellow T1Ds! Get to know each other while doing crafts or visitin Continue reading >>

Why Aren’t There More People Of Color At Diabetes Conferences?

Why Aren’t There More People Of Color At Diabetes Conferences?

Opinion I grew up in a small town in Northeast Georgia with a fairly large African American population, but a lot of the things I was interested in wasn’t popular with most of the black kids in my community. As a kid, I was usually the only black kid into something, whether it was band, 4H, or chorus. I was diagnosed with Type 1 diabetes around 1989 when I was 25 years old. I had all the typical symptoms but didn’t think much of it, since I knew nothing about diabetes. Eventually, my roommate set me up with an appointment with the urologist (you read that right) who diagnosed me. sponsor Back in my day, there was no Meetup or Myspace, and definitely no Facebook, so meeting others who lived with diabetes was pretty much a crapshoot. When I found a group, it turned out to be made up mostly of seniors; as a 25-year-old guy, that was not my idea of a party. It would be many years before I found groups and organizations that helped people with diabetes connect and support each other. I basically had to wait until I had internet access to find these groups. By the time I transitioned all my friends from Myspace to Facebook, I had my first insulin pump. I also had my first experience with diabetic retinopathy in one eye. By the time my other eye became damaged, I had begun taking my diabetes more seriously than I had in years past. I tried to learn more about how I could save my vision and my overall health. Facebook helped me connect with several advocates, and others with diabetes. Through those connections I was able to learn more about the effects of diabetes, not just on how it affects the body, but also on how it affects people socially and economically. That’s when I decided to become an advocate for people who often struggled with obtaining diabetic supplies like Continue reading >>

Non Profit Patient Advocacy Groups For Diabetes Mellitus

Non Profit Patient Advocacy Groups For Diabetes Mellitus

Non Profit Patient Advocacy Groups for Diabetes Mellitus Share on Twitter Share on Facebook Share on Google+ Share on LinkedIn Diabetes Mellitus is a global public health issue. Millions of people all over the world suffer from this life long condition. In fact, this is one such disease where the patient (and his or her family) rather than the doctor and health care provider plays a more significant role in managing their condition. Once an individual is diagnosed with Diabetes, then a doctor can only advice on medicines, diet and lifestyle modifications. The primary work needs to be carried out by the patient in managing their diet, medication schedule etc. In many cases patients may fail to properly manage their blood glucose and only follow the recommended treatment and lifestyle regimens after their physical condition has aggravated and they have developed complications like Neuropathy or Nephropathy (kidney problems). There are numerous patient advocacy groups/organizations world-wide whose sole purpose is to educate the masses on the seriousness of the disease and ensure ways for better management (read about my earlier post on patient advocacy groups for Multiple Myeloma ) 1. The American Diabetes Association is a very well known group. It undertakes all kinds of activities to help patients affected with diabetes recover. It gives financial support for any research work that aids in preventing, curing or managing diabetes. There is no bar or target group as the organization caters to all who approach them. They have offices globally and try to meet all inquiries with authentic and reasonable information. 2. The Juvenile Diabetes Research Foundation (JDRF) is a leading organization that provides information, support and funding for Type 1 Diabetes Mellitus. Based Continue reading >>

Diabetes Advocacy...support Networks

Diabetes Advocacy...support Networks

"Few chronic conditions require as much vigilance as diabetes. Whether you're working at the office, relaxing by the fireplace or strolling on the deck of a Caribbean cruise-boat, diabetes follows you around like a hungry dog. Diabetes demands your attention day in and day out. You are required to balance your food intake with your exercise routine, to keep track of how much you ate and when you ate, to monitor your blood glucose levels, and possibly to take insulin..." The above was taken from Diabetes Dialogue in an article entitled Breaking Free of the Stress Zone by Gabrielle Bauer (Summer 2003, Volume 50 No. 2 Page 8). For us, it highlights why support is so very vital to all who have had this "hungry dog" move into their house. Support can be found in families, through diabetes teams, in local support groups, as well as online. www.childrenwithdiabetes.com offers mailing lists that support both parents, children, and teens as well as chat rooms that can be of great comfort, support, and information. Facebook , TuDiabetes and even Twitter offer many other great connections to the Diabetes Online Community (aka the DOC). InsulinPumpers.org An exceptionally informative site for those who are pumping insulin or looking to begin insulin pump therapy. Rufus and Ruby....the bears with Diabetes Support for children can also be found in various bears such as Rufus and Ruby who both provide comfort and help fund a cure. Rufus and Ruby, the Bears with Diabetes , have come to symbolize hope and support for those children living with Type 1 Diabetes. Created by a loving mother, Carol Cramer, after her own son was diagnosed with Type One Diabetes. Rufus and Ruby have patches where insulin should be injected, hearts on their paws for glucose testing, and a Medic Alert bracelet Continue reading >>

Diabetes Advocacy Groups: 2015 Successes And 2016 Plans

Diabetes Advocacy Groups: 2015 Successes And 2016 Plans

We're sorry, an error occurred. We are unable to collect your feedback at this time. However, your feedback is important to us. Please try again later. Once more with feeling: HAPPY NEW YEAR 2016! We have a lot of traditions here at the 'Mine, but one of our favorites is querying the country's top diabetes advocacy organizations at the end of each year to share what they've accomplished, and what they have in store for the new year ahead. So, once again we asked the pointed questions: What did these groups actually achieve in 2015? And what do they plan to make happen in 2016? Below are the answers we received from their various leaders and spokespeople (in alphabetical order).There is a ton of great information here about what's happening in the Diabetes World, so we invite you to grab a cup of coffee, get yourself comfortable, and dig in... American Association of Diabetes Educators (AADE) This was another busy year. The board of directors initiated our 2016-2018 Strategic Plan in mid-2014 with an environmental scan that includedgathering input from all corners of the diabetes community including members ofthe DiabetesOnline Community and people with diabetes. A few points are worth noting: Toguide our work we created a Spheresof Influence framework , a schematic that maps the influences and interactions at each level of diabetesimpact on individuals and society. We have placedpeople with, at risk for or affected by diabetes and related chronicconditions, at the center of this framework because you are the focus of ourwork. This framework helps indicate the many areas where diabetes educators anddiabetes education have opportunities to make an impact. Our new vision, missionand guiding principles along with strategies and outcomes will be on the AADEwebsite in early Continue reading >>

Long-term Access For People With Type 1 Diabetes

Long-term Access For People With Type 1 Diabetes

Long-term Access for People with Type 1 Diabetes People in the USA, and throughout the rest of the world, are increasingly unable to afford the astronomical costs associated with their Type 1 diabetes. Our charity, T1International, did a survey in 2016 which showed that people in the USA are paying, on average, $571.69 per month on diabetes costs. It also showed that someone in Brazil or India might have to spend as much as 80% of their income each month to afford the costs of their diabetes. The reasons behind this unaffordability are complex, and solutions can feel overwhelming. Not to mention, there are things that might look like solutions on the surface, which can sometimes actually be more detrimental. For example, some of the big and powerful insulin manufacturers are supporting people with Type 1 diabetes around the globe by providing donations of insulin to communities in need. While these donations can save lives, they can also hold clinics and patients hostage. The beneficiaries of these donated essentials become completely reliant on the insulin companies to continue their generosity. T1International has worked with several groups who explained that patients found themselves in intensely dangerous situations because a company decided that they could no longer afford to support the communities they had been helping. On other occasions, the quantity of vials of insulin donated or test strips provided was significantly reduced , even though more people were being diagnosed with Type 1 diabetes in the area. Essentially, the insulin producer pulled the lifeline away from people in desperate need. When insulin producers are making billions of dollars in profits, how can theyjustify reducing or removing their support in parts of the rest of the world? How can they Continue reading >>

Emotional Support For Type 1 Diabetes

Emotional Support For Type 1 Diabetes

A support group can provide you with emotional encouragement as you deal with challenges unique to people with type 1 diabetes. "Having a support group can put you in touch with other people who are going through the same thing," notes Jennifer Goldman-Levine, PharmD, a diabetes educator and associate professor of pharmacy practice at Massachusetts College of Pharmacy and Health Sciences in Boston. Goldman-Levine says that support groups are especially important because being diagnosed with type 1 diabetes can be isolating. "Only a small population in the diabetes community — 5 to 10 percent — has type 1 diabetes." Dana Lewis, a student at the University of Alabama and a diabetes advocate who was diagnosed with type 1 diabetes at age 14, agrees that feeling alone is a significant issue for type 1 diabetics. "Diabetes is not a disease or an illness that anyone can see. People don't think [having type 1 diabetes is] a big deal, but any fluctuations in your blood sugar can affect your mood and your performance in the classroom or at work," Lewis explains. A major benefit of type 1 diabetes support groups is "having someone who understands what it is like to live with that," she adds. Type 1 Diabetes: In-Person Support Groups When you get together with others who have type 1 diabetes, you can encourage each other, share ideas, talk about your experiences, and find new ways to cope with your condition. "There are [specific] problems that may arise in patients with type 1 diabetes, and sometimes going to support groups with other people who have been living with it longer than you can help," explains Goldman-Levine. She says that support group members can teach you things like how to adjust your insulin levels based on what you eat. "You can learn a lot from other people Continue reading >>

Diabetes Health Type 1: The Good And The Bad In Our Diabetes Advocacy World

Diabetes Health Type 1: The Good And The Bad In Our Diabetes Advocacy World

Diabetes Health Type 1: The Good and the Bad in Our Diabetes Advocacy World Lets look at some recent examples of activism that have largely been driven by patients with diabetes and why these accomplishments are so exciting. There are three notable examples, which are as follows: Getting CMS Medicare coverage for CGMs was once seen as unlikely. We can thank patient advocacy for this 2017s decision by the Centers for Medicare & Medicaid Services (CMS) for Medicare/Medicaid coverage of Dexcom G5 continuous glucose monitoring systems for people with diabetes. Dexcom CGMs were previously labeled by the U.S. Food and Drug Administration (FDA), as an adjunctive device, meant to complement but not replace, the information obtained from more traditional fingerstick blood glucose monitoring systems. Essentially, the FDA previously determined CGM readings could not be used to make therapeutic treatment decisions (such as insulin dosages). Dexcom concluded that the best way to attain Medicare coverage of CGMs was to work within the confines of CMS, and in September 2015, it took the first step by requesting that the FDA re-label the G5 device as a therapeutic CGM which could technically be used as a replacement of fingerstick blood glucose testing for diabetes treatment decisions. Diabetes patient voices played a critical role in persuading the FDA to approve the new labeling request for the Dexcom G5 system. For example, in early July 2016, the diaTribe Foundation (see for the recommended letter text) began seeking signers for a letter it had drafted in support of the new label indication Dexcom was seeking, and it aimed to get at least 1,000 signers to the letter. Its letter was actually signed by over 10,000 people with diabetes and their families; see for details. diaTribe wa Continue reading >>

When A Nonprofit Business Model Turns Bad, Patients Sidestep Advocacy Groups

When A Nonprofit Business Model Turns Bad, Patients Sidestep Advocacy Groups

When a Nonprofit Business Model Turns Bad, Patients Sidestep Advocacy Groups NPQ has written repeatedly about how the funding of patient advocacy groups by pharmaceutical and medical device corporations has hijacked a frontline of defense for those with chronic diseases. In other words, when you take money from business interests whose bottom-line profits are made off your constituents, it mutes your voice in a pernicious way that should not be tolerated. Yesterday, Kaiser News reported on a win for patient advocates in Nevada as they goosed a bill in the legislature requiring insulin makers to disclose the profits they make on the drug necessary to the survival of the 1.25 million Americans who live with Type 1 diabetes. The cost of insulin has risen more than threefold over the last decade, only to be met with a truly stunning silence from patient advocacy nonprofits. In this case, the patients had to go it alone and without the support of patient advocacy groups like the American Diabetes Association, notable for their absence in this fight. Why so quiet? That traces back to their financial ties to the very pharmaceutical industry being challenged in such legislation. This article says that many of the dozens of U.S. diabetes advocacy organizations, large and small, garner significant portions of their funding from insulin manufacturers. The Nevada bill in question would require such contributions be openly disclosed. In 2016, two of the big three insulin producersEli Lilly and Sanoficontributed at least $4.7 million to such national patient advocacy groups as the American Diabetes Association, Diabetes Patient Advocacy Coalition (DPAC), JDRF International and the Diabetes Hands Foundation, according to company disclosures. The third major insulin manufacturer, Novo Continue reading >>

School Advocacy For Type 1 Diabetes - Type 1 To Go

School Advocacy For Type 1 Diabetes - Type 1 To Go

School support is an important issue for families living with Type 1 Diabetes. Beyond Type 1 , a global non-profit Type 1 Diabetes organization, recently posted a blog written by Anne Imber about school advocacy for Type 1 Diabetes. BT1 featured the blog about the team of school advocates in Texasaiming to create a voice for their Type 1 families. Cy Fair Type One Connection isgroup of T1D parents striving to create a positive and pro-active relationship with their school system on behalf of all their Type 1 families. Read more below on Cy Fair Type One Connection! Amy Josefy, Anne Imber, Carolyn Boardman, (Not pictured, Ilka McCraren, Courtney Livingston) Amy Josefy & Carolyn Boardman lead other T1D causes too such as the BT1 DKA Awareness campaign in Texas. With the help of their friends, family and fellow Cy Fair Type One families, they packed and shipped materials for pediatricians across the state. Cy Fair Type One Leader, Robin Hall (far right) has two T1D boys. She has been mentoring families in Cypress for years.The CFTOC committee meets often to discuss and propose T1D school solutions based on community feedback. CFTOC Families stay connected through a closed Facebook Group Supporting Type 1 Diabetes Non-Profit Organizations & Causes Cy Fair Type One Connection Teens help with the BT1 DKA Awareness campaign. From left to right, Matthew Boardman, Macey Parr and Jackson Sutter. T1D Teens serve their community together through CFTOC. Cy Fair Type One Leader, Anne Imber, conducts and supports JDRF School Walks within her school district. Raising T1D awareness is a priority of CFTOC. Core Team Leader,Courtney Livingston, participates in Cy Fair Type One picnic for the American Diabetes Association's Camp Rainbow. Families raised money for this Type 1 Diabetes camp Continue reading >>

How To Be A Diabetes Advocate | Diabetic Connect

How To Be A Diabetes Advocate | Diabetic Connect

By Susan B. Sloane, BS, RPh, CDENo Comments Susan B. Sloane, BS, RPh, CDE, has been a registered pharmacist for more than 20 years and a Certified Diabetes Educator for more than 15 years. Her two sons were diagnosed with diabetes, and since then, she has been dedicated to promoting wellness and optimal outcomes as a patient advocate, information expert, educator, and corporate partner. November is Diabetes Awareness Month. The Blue Circle is the global symbol of unity in the fight against diabetes. Pledge your support now! We all need advocates in life, right? An advocate is someone who supports and stands up for you, someone who protects your rights. This is why people who advocate for patients with diabetes are so important. Whether you are discriminated against at work or have insurance questions because you cant afford your medications, an advocate can help support you. For example, your local chapter of a diabetes association, such as the American Diabetes Association or the Juvenile Diabetes Research Foundation, can give you names of people who will work for you to get you the help you need. Diabetes advocates, working with associations all across the country, speak out and lobby for patients rights in every scenario you may imagine. For the National Step Out Team, which is the walk to raise money for ADA, diabetes advocates spoke about the need to make certain that public policies and funding match up to the seriousness of diabetes. Advocates protect your right to avoid discrimination in the workplace for people with diabetes. They also help keep our children with diabetes safer with the Safe at School Campaign. Many advocates show up in state capitols and in Washington D.C. to meet with Congress and the Senate to ensure healthcare is affordable and available t Continue reading >>

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