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    • 15 hours, 11 minutes ago
      ConnieT1D62 likes your comment at
      Does your T1D healthcare provider suggest new medications or devices that they think would be beneficial to your T1D management during your appointments?
      I’m almost always more informed of the reported advancements in T1 treatments than my doc. So I usually bounce ideas off the doc for his input.
    • 15 hours, 12 minutes ago
      ConnieT1D62 likes your comment at
      Does your T1D healthcare provider suggest new medications or devices that they think would be beneficial to your T1D management during your appointments?
      I am my own advocate. I read about new devices and always investigate side effects of any new medication before starting. I usually bring up but then have good discussion with Endo before making decisions.
    • 15 hours, 13 minutes ago
      ConnieT1D62 likes your comment at
      Does your T1D healthcare provider suggest new medications or devices that they think would be beneficial to your T1D management during your appointments?
      With my endo, I usually have to ask. With the Diabetes Educator, she'll make the suggestion first. They're both very aware that I'm dependent on insurance covering the majority of the cost.
    • 16 hours, 27 minutes ago
      Trina Blake likes your comment at
      Does your T1D healthcare provider suggest new medications or devices that they think would be beneficial to your T1D management during your appointments?
      I wouldn't say that my T1D healthcare provider OFTEN suggests medications or devices that they think would be beneficial to my diabetes management, but they do SOMETIMES suggest options available to me. (I was privileged to be the first person, in the area that I live, to be offered CSII (Continuous Subcutaneous Insulin Infusion, or pump technology) to help control my diabetes. This was after my endocrinologist attended a diabetes conference in the United States where a former Miss America, Nicole Johnson, was demonstrating a Medtronic/MiniMed insulin pump. He asked her for more information on how these pumps work, mentioning that I had extreme difficulty in controlling my diabetes, with me spending as much time in hospital as I was at home when I was taking multiple daily injections (MDI). On his return to the UK, he offered me the opportunity to 'trial' the pump, which I accepted. This was in 1989.)
    • 16 hours, 32 minutes ago
      beth nelson likes your comment at
      If you have T1D, have you ever dated or married someone who also has T1D?
      No, I was the one who had diabetes
    • 16 hours, 33 minutes ago
      beth nelson likes your comment at
      If you have T1D, have you ever dated or married someone who also has T1D?
      I fell in love with an insulin-dependent Type 2 20 years ago. There’s something terribly romantic about taking Lantus together at the end of the day.
    • 16 hours, 33 minutes ago
      beth nelson likes your comment at
      If you have T1D, have you ever dated or married someone who also has T1D?
      Already married over forty years when I was diagnosed.
    • 16 hours, 33 minutes ago
      beth nelson likes your comment at
      If you have T1D, have you ever dated or married someone who also has T1D?
      I never knew of anyone who had diabetes, type 1 or 2 before I was married. I became a T1D after I was married.
    • 16 hours, 37 minutes ago
      beth nelson likes your comment at
      If you have T1D, have you ever dated or married someone who also has T1D?
      I answered “no.” I don’t think my girlfriend at diabetes children’s camp when I was 13 counts. While I think there would be a lot I would have in common with a partner with T1D, I wouldn’t want that to be what brought us together, and I don’t think it would keep us together.
    • 16 hours, 38 minutes ago
      beth nelson likes your comment at
      If you have T1D, have you ever dated or married someone who also has T1D?
      went on one date with a T1D. she had been dx'd as a child (I was dx'd at 43) so she was very old school. she ragged on me during the entire date about my menu choices, my carbs estimation for my shot and she lost her mind when I ordered a Corona! punchline is that my sugar was less than 150 when I went to sleep.
    • 16 hours, 38 minutes ago
      beth nelson likes your comment at
      If you have T1D, have you ever dated or married someone who also has T1D?
      When I was married, diabetes was not in the picture at all. All I knew was an uncle who died in 1929 because he refused injections. I developed LADA in my 40's, followed by my husband with Type 2, then my two daughters who had PCOS and Type 2, then my son with Type 2. Enough.
    • 16 hours, 38 minutes ago
      beth nelson likes your comment at
      If you have T1D, have you ever dated or married someone who also has T1D?
      I am married to someone with Type 2.
    • 16 hours, 38 minutes ago
      beth nelson likes your comment at
      If you have T1D, have you ever dated or married someone who also has T1D?
      I have been married since 1985. My wife Susan does not have either type 1 or 2 diabetes, but rather type 3 diabetes- spouse or mate of someone with T1D...:) She has been my guardian for night lows, though she has rarely had to intervene since I started CGM in 8-2006.
    • 16 hours, 38 minutes ago
      beth nelson likes your comment at
      If you have T1D, have you ever dated or married someone who also has T1D?
      I dated someone, but I was/am not out of the closet about having T1 so he didn’t know that I have T1
    • 16 hours, 38 minutes ago
      beth nelson likes your comment at
      If you have T1D, have you ever dated or married someone who also has T1D?
      My husband was diagnosis at age 3 and I was diagnosed at age 4.
    • 16 hours, 59 minutes ago
      Janis Senungetuk likes your comment at
      Does your T1D healthcare provider suggest new medications or devices that they think would be beneficial to your T1D management during your appointments?
      I wouldn't say that my T1D healthcare provider OFTEN suggests medications or devices that they think would be beneficial to my diabetes management, but they do SOMETIMES suggest options available to me. (I was privileged to be the first person, in the area that I live, to be offered CSII (Continuous Subcutaneous Insulin Infusion, or pump technology) to help control my diabetes. This was after my endocrinologist attended a diabetes conference in the United States where a former Miss America, Nicole Johnson, was demonstrating a Medtronic/MiniMed insulin pump. He asked her for more information on how these pumps work, mentioning that I had extreme difficulty in controlling my diabetes, with me spending as much time in hospital as I was at home when I was taking multiple daily injections (MDI). On his return to the UK, he offered me the opportunity to 'trial' the pump, which I accepted. This was in 1989.)
    • 17 hours ago
      Janis Senungetuk likes your comment at
      Does your T1D healthcare provider suggest new medications or devices that they think would be beneficial to your T1D management during your appointments?
      I think my healthcare providers learn about new medications and devices at about the same time that I do. This wasn't the case when I was first diagnosed, pre-internet. Back then, I always looked forward to seeing my CDE because I knew I'd come away with something to make my life easier/better.
    • 17 hours, 19 minutes ago
      Bonnie Lundblom likes your comment at
      If you have T1D, have you ever dated or married someone who also has T1D?
      I have been married since 1985. My wife Susan does not have either type 1 or 2 diabetes, but rather type 3 diabetes- spouse or mate of someone with T1D...:) She has been my guardian for night lows, though she has rarely had to intervene since I started CGM in 8-2006.
    • 17 hours, 28 minutes ago
      beth nelson likes your comment at
      Does your T1D healthcare provider suggest new medications or devices that they think would be beneficial to your T1D management during your appointments?
      I may already be on the best medications and devices available to me.
    • 17 hours, 29 minutes ago
      beth nelson likes your comment at
      Does your T1D healthcare provider suggest new medications or devices that they think would be beneficial to your T1D management during your appointments?
      I wouldn't say that my T1D healthcare provider OFTEN suggests medications or devices that they think would be beneficial to my diabetes management, but they do SOMETIMES suggest options available to me. (I was privileged to be the first person, in the area that I live, to be offered CSII (Continuous Subcutaneous Insulin Infusion, or pump technology) to help control my diabetes. This was after my endocrinologist attended a diabetes conference in the United States where a former Miss America, Nicole Johnson, was demonstrating a Medtronic/MiniMed insulin pump. He asked her for more information on how these pumps work, mentioning that I had extreme difficulty in controlling my diabetes, with me spending as much time in hospital as I was at home when I was taking multiple daily injections (MDI). On his return to the UK, he offered me the opportunity to 'trial' the pump, which I accepted. This was in 1989.)
    • 17 hours, 29 minutes ago
      beth nelson likes your comment at
      Does your T1D healthcare provider suggest new medications or devices that they think would be beneficial to your T1D management during your appointments?
      I think my healthcare providers learn about new medications and devices at about the same time that I do. This wasn't the case when I was first diagnosed, pre-internet. Back then, I always looked forward to seeing my CDE because I knew I'd come away with something to make my life easier/better.
    • 17 hours, 29 minutes ago
      beth nelson likes your comment at
      Does your T1D healthcare provider suggest new medications or devices that they think would be beneficial to your T1D management during your appointments?
      I had to answer “other” because I just got a new endo after my other one retired so I’ve only met with him once. Too early to discuss new technology or medications.
    • 17 hours, 29 minutes ago
      beth nelson likes your comment at
      Does your T1D healthcare provider suggest new medications or devices that they think would be beneficial to your T1D management during your appointments?
      Generally, no, my healthcare provider does not suggest new medications or devices. However, it is not often that new meds/devices become available. Most things are dependent upon my quarterly blood tests. Recently, my Endo put me on statin drugs when my bloodwork showed high cholesterol over a six month period. Otherwise, I am usually the one who asks about new devices about which I have heard or read.
    • 17 hours, 29 minutes ago
      beth nelson likes your comment at
      Does your T1D healthcare provider suggest new medications or devices that they think would be beneficial to your T1D management during your appointments?
      I’m almost always more informed of the reported advancements in T1 treatments than my doc. So I usually bounce ideas off the doc for his input.
    • 17 hours, 30 minutes ago
      beth nelson likes your comment at
      Does your T1D healthcare provider suggest new medications or devices that they think would be beneficial to your T1D management during your appointments?
      I am on the Dexcom, I’m not on a pump though. I am LADA so I have very high insulin resistance, so I use a lot of insulin & there’s just not a pump that would be efficient for my amount of insulin. I’ve tried to get Afrezza, but every Endoc I bring it up to won’t prescribe it. Even though I bring them evidence that it doesn’t cause lung cancer when you’re not a smoker. So frustrating that we can’t agree on that course of treatment.
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    Have you participated in a diabetes-related advocacy effort (I.e., calling your elected officials, meeting with representatives, etc.)?  If you have, share your experience in the comments.

    Home > LC Polls > Have you participated in a diabetes-related advocacy effort (I.e., calling your elected officials, meeting with representatives, etc.)?  If you have, share your experience in the comments.
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    38 Comments

    1. Carolann Hunt

      Yes and it was a waste of time especially since that person was Scott Perry 😡

      1
      7 months ago Log in to Reply
    2. Bob Durstenfeld

      I have met with our local congress woman several times to advocate for sound diabetes and health policy. I also regularly write both my congress and senate representatives
      emails about the cost of health care.

      3
      7 months ago Log in to Reply
    3. Mary Dexter

      With funding from Diabetes Hands, I wrote and produced The Sweet Lowdown, which was performed at Broom Street Theater. Video of the show is on YouTube.

      4
      7 months ago Log in to Reply
    4. Barbara Bubar

      I also have a congressperson who is totally against everything but claims credit for everything she votes AGAINST that turns out to help her constituents. I did send one email to her about insulin pricing and got a typically talking points and worthless letter back.

      3
      7 months ago Log in to Reply
    5. Brent Perris

      I called my senator to explain how universal healthcare would make us diabetics lives so much easier. No response

      4
      7 months ago Log in to Reply
    6. Kathy Hanavan

      I have signed petitions, sent letters to congress folks, the FDA, etc ,but have not met with anyone in person.

      2
      7 months ago Log in to Reply
    7. Greg Felton

      I met with my Congressional reps years ago in support of diabetes research funding. That went well. Less successful was my letter to President George W Bush in 2001, asking him not to stop federal support of stem cell research. I got a nice letter back, anyway.

      4
      7 months ago Log in to Reply
    8. Nicholas Argento

      I’ve met w congressman with jdrf. I also was deeply involved in efforts to get cgm approved by Medicare and represented the endocrine society in meetings with them, and testified before FDA advocating for dexcom G 5 to be approved for fingerstick replacement, which was needed before Medicare would consider cgm coverage . I was one of many that day. Waiting for the verdict on whether the advisory board would recommend approval was like waiting for a jury verdict. I was sitting next to Aaron Kowalski who atbthe time was jdrf chief mission officer. When the vote came back overwhelmingly for there was euphoria in the room. Everyone knew the real implication was for Medicare. I was in a key meeting w Medicare staff on this question and the questions being asked and the attitude of the people asking demonstrated that they did not get it. I was furious and sad leaving that meeting. Fortunately a top official who was involved likely overruled the knuckle heads who were in opposition. The decision was announced a few months later. One of the happiest days of my life!!!

      5
      7 months ago Log in to Reply
      1. Lawrence S.

        Thank you for you work.

        1
        7 months ago Log in to Reply
      2. Ahh Life

        Demonstrably no shortage of knuckleheads and flapdoodles, perhaps to be doomed to the dustbin of history. But good work is always appreciated. 😇

        7 months ago Log in to Reply
      3. Lorri McLuckie

        Thank you for all your hard work!

        1
        7 months ago Log in to Reply
    9. Donal Conway

      Yes I have spoken with the Irish Minister for health in person about issues of not having a CGM scanning device on the LTI list in Ireland, also not having nurses available to train Diabetes patients approved by Doctors to go on the pump system in Ireland and also about the need to have a diabetes registery set up in the country. One of those items have now recently being addressed, the Dexcom CGM is now listed.

      4
      7 months ago Log in to Reply
    10. Ms Cris

      Yes, for several years I’ve consistently written letters/email to my State and U.S. senators and representatives. I use templates from T1 International, JDRF, ABLE National Resource Center, and others. Insulin availability and affordability, the difference between T1 and T2, pushing the ABLE Age Adjustment Act, and more. I typically get form responses back.

      3
      7 months ago Log in to Reply
    11. Sue Martin

      I have used and asked my family to use an email letter to our elected officials from JDF.

      7 months ago Log in to Reply
    12. mojoseje

      Wrote to my state representatives. Got a form letter from one (R) full of platitudes and a personal letter from the other (D) listing several ways she’s sponsored bills and voted for helping people with diabetes.

      1
      7 months ago Log in to Reply
    13. Janis Senungetuk

      Over the years I’ve signed numerous petitions and sent personalized emails to our congress and senate representatives. I’ve also called their offices and left messages. I get form letters back in response.

      1
      7 months ago Log in to Reply
    14. Lawrence S.

      In 2020, I mailed letters and sent emails to Senator Rick Scott (R), Florida, Senator Marco Rubio, Florida , and Congressman John Rutherford (R), Florida asking for help correcting a Medicare policy that prohibits Continuous Glucose Monitors (CGM) from communicating directly with insulin pumps. (That’s right, there is such a rule). I heard absolutely nothing from Senator Rick Scott and Congressman John Rutherford. Six months after I sent the letters, I received form letter from Senator Marco Rubio that talked about the frustrations of healthcare expenses, and his commitment to finding cures various diseases. He did not even acknowledge issue that I asked to be addressed.

      2
      7 months ago Log in to Reply
      1. LL

        Thank you for your efforts on these seemingly silly rules. I will add that to my concerns/tasks. I am currently working on the fact that NYS medicaid providers refuse to cover smart Inpen, however they are covering $5000 pumps. My daughter prefers to have less devices attached to her, has had commercial coverage several years for this device. There are endless illogical injustices. We soldier on. Thank you again.

        2
        7 months ago Log in to Reply
      2. Ahh Life

        Lawrence S — Yes. And to add insult to injury to ignorance, the Honorable Rick Scott now only was oblivious to my suggestion, for the next seventeen months I got nothing, NOTHING, but requests for money. Is it any wonder that politicians are labeled unresponsive? I though unresponsive was for cadavers?!?

        2
        7 months ago Log in to Reply
      3. Lawrence S.

        Ahh Life, et al.:
        It should be noted that on August 8, 2022, Senators Marco Rubio and Rick Scott VOTED AGAINST the bill to cap the price of insulin at $35/month.

        7 months ago Log in to Reply
      4. Lawrence S.

        I researched the House of Representatives vote on H.R. 6833: Affordable Insulin Now Act, March 31, 2022. One hundred ninety three (193) Republican reps voted against reducing the cost of insulin, including Florida representative John Rutherford. In case you wanted to know.
        Find your legislator’s vote at: https://www.govtrack.us/congress/votes/117-2022/h102

        7 months ago Log in to Reply
    15. Pauline M Reynolds

      Yes, but……I am limited to signing letters and surveys because I am basically shut in and also an introvert at heart.

      1
      7 months ago Log in to Reply
    16. Becky Hertz

      No, but I’d it really “no”? I’ve not spoken directly to them but have submitted letters etc.

      2
      7 months ago Log in to Reply
    17. LL

      Yes, Many times. Wish I had time to share now. I am advocating constantly for t1d community and several others. Met with elected officials, attend many events with officials in attendance . . . . .

      1
      7 months ago Log in to Reply
    18. Kristine Warmecke

      No, I’ve not done any in person advocacy, only letter writing.

      1
      7 months ago Log in to Reply
    19. Henry Renn

      I lodged complaint & advocated with local hospital to change their protocul for hospitalized Type 1s using a pump.

      2
      7 months ago Log in to Reply
      1. kristina blake

        Awesome! How did things turn out. The hospital I have to use requires T1D patients to turn over their pumps, CGM’s, and meters. They’ll do maybe 5-6 fingersticks a day, and set a target bg of 200. Really lousy T1D management. Thanks for you efforts, I’d love to hear the story.

        7 months ago Log in to Reply
    20. Kim Davis

      Mostly calling or writing senators when a problem existed. They always send a letter thanking me for addressing this different issues!

      1
      7 months ago Log in to Reply
    21. Janice Bohn

      I was in a commercial advocating for healthcare. I have written confess people and had a letter I wrote read on the senate floor. I also sign petitions and add my story when asked

      1
      7 months ago Log in to Reply
    22. Brian Vodehnal

      Checked a box on a robo email and got a form letter back from a state senator. To which I replied and asked why private insurance is being discriminated against on the latest pharmaceutical bill they are so proud of…received another robo email from her in the vain of vote for me….lost faith and interest.

      7 months ago Log in to Reply
    23. Jennifer Wilson

      I have signed up to participate multiple times but have never been contacted.

      7 months ago Log in to Reply
    24. kristina blake

      I used to write guest editorials in the local newspapers during November. But never got published (I wish D month wasn’t in competition with elections!) When I contact elected officals, I use an economic argument – that access to what we need to manage our T1D means that we can continue to work (and pay taxes), support our families, contribute to the local economies. I also delve into the fact (which should be of interest to federal officials) that access to what we need meams that we won’t experience the devastating complications that would make it hard to have a job, would result in disabilities that would block a lot of employment, we would require public assistance to survive and by the time we arrive at Medicare elgibility we’d be a lot more expensive.

      I did finally see the results of one letter. In a campaign for governor a candidate held up a vial of insulin, stated that it costs just a few $ to manufacture and distribute but retails for hundred of $.

      1
      7 months ago Log in to Reply
    25. Wanacure

      Thanks to all of you who have written or telephoned or testified. Your efforts have worked, but we must continue to lobby. I like Kristina’s economic arguments. 🙂 I’ve heard it’s best to keep letters and phone calls polite and short and limited to one specific point. Mention the specific senate or house bill you’re endorsing, if available. And of course “personalize your message.” Politicians are especially willing to listen to us in an election year. If you contribute a $5 check to a politician, make sure to note on the memo line, “To cure diabetes” or “Medicare for All” or “Thanks for lower insulin cost” et al.

      7 months ago Log in to Reply
    26. Joan McGinnis

      I write regularly as I have T1D and am a retired Certified diabetes educator. they always answer with a form letter. Also have met with 1 US House representative at his office which was excellent and he was very responsive 0 this was arranged by the local JDRF office and anyone allowed to come – very few did but it was very informative and got to say anything I wanted. Met with my state representatives (picked the 3 closest districts to me) to discuss diabetes issues. All were interested and responsive and I offered tone a helper on anything related to diabetes. They asked good questions and were quite interested. I just called and made an appt to discuss with them my diabetes itinerary. They all agreed immediately. I keep in touch with their newsletters and write when appropriate.

      1
      7 months ago Log in to Reply
    27. Patricia Maddix

      I advocate for diabetes issues constantly by sending letters to my representative and senators as well as calling their offices. I have also met numerous times by phone and zoom with senators and representatives on these issues I work on advocacy for JDRF, and the national Federation of the blind. I am currently a member of a seven person task force advocating for simplification and accessibility for insulin pumps for the blind and visually impaired. We are making great progress and recently have been meeting regularly with all of the major pump companies this task force is a collaboration between the national Federation of the blind, American council of the blind, and Canadian national Institute for the blind. we are showing them that features they need to add to pumps to make them accessible for people who are visually impaired will also give sighted people many wonderful features that they will also find valuable. Such as the bolus feature that was recently added to the Tandem T connect app. diabetes is still the leading cause of blindness in the United States and other countries in working age adults and as the population ages there will be increased sight loss due to not only diabetes but age related eye conditions. We can use everyone’s help in spreading the word for the need to make insulin pumps accessible.

      2
      7 months ago Log in to Reply
      1. Lawrence S.

        Thank you for your work.

        1
        7 months ago Log in to Reply
    28. Jim Cobbe

      Not in person; I have signed internet petitions, sent emails, etc in the past, particularly with respect to costs of insulin and supplies and insurance coverage.

      7 months ago Log in to Reply
    29. KarenM6

      The only active, letter-writing advocacy I have done is with a medical group who had a policy that I thought was unfair and not valid with current knowledge.
      My efforts were ignored, so I left the medical group.

      7 months ago Log in to Reply

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