Hemophilia News Today Forums | Site-Wide Activity https://hemophilianewstoday.com/forums/activity/ Activity feed for the entire site. Mon, 12 Oct 2026 18:29:16 -0500 https://buddypress.org/?v=3.5.0 en-US 30 hourly 2 419161492932cb78e1fa333cf1459e58 Community Member replied to the discussion Does hemophilia run in your family, or were you the first to be diagnosed? in the forum Hemophilia Inheritance https://hemophilianewstoday.com/forums/forums/topic/does-hemophilia-run-in-your-family-or-were-you-the-first-to-be-diagnosed/#post-12738 Thu, 08 Oct 2026 20:08:43 -0500 Reply to Does hemophilia run in your family, or were you the first to be diagnosed?

That sounds like such a lovely community to grow up with! My husband loved being active and tried different sports, but swimming became his thing after the local hemophilia org recommended it. Coincidentally his older brother was already part of the school swim team at the time so my husband got a chance to do lessons alongside big bro.…

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]]> 016cf526251e9550c1dde34470936e12 Community Member replied to the discussion Does hemophilia run in your family, or were you the first to be diagnosed? in the forum Hemophilia Inheritance https://hemophilianewstoday.com/forums/forums/topic/does-hemophilia-run-in-your-family-or-were-you-the-first-to-be-diagnosed/#post-12737 Tue, 06 Oct 2026 19:55:27 -0500 Reply to Does hemophilia run in your family, or were you the first to be diagnosed?

We used to go to informational meeting together growing up! The IHTC was incredible at community outreach and would host lots of family events that helped us all get familiar with it. It is hard to be in the only one in the family! Sports were a big hurdle, and it was hard for people to find ways to be inclusive. Did your husband struggle with that?

]]> 7f083fd7b89cc905c5ef1b4cf226d1f5 Community Member replied to the discussion Does hemophilia run in your family, or were you the first to be diagnosed? in the forum Hemophilia Inheritance https://hemophilianewstoday.com/forums/forums/topic/does-hemophilia-run-in-your-family-or-were-you-the-first-to-be-diagnosed/#post-12736 Tue, 06 Oct 2026 14:06:43 -0500 Reply to Does hemophilia run in your family, or were you the first to be diagnosed?

Same with my husband, Emmi – he’s the only one in his family diagnosed with hemophilia! It’s sometimes hard having no one in the family who shares that experience. What was it like for your family learning about hemophilia together?

]]> 90f75c90822fd931e8378c6d92d3bd9c Community Member replied to the discussion Does hemophilia run in your family, or were you the first to be diagnosed? in the forum Hemophilia Inheritance https://hemophilianewstoday.com/forums/forums/topic/does-hemophilia-run-in-your-family-or-were-you-the-first-to-be-diagnosed/#post-12724 Fri, 02 Oct 2026 19:25:38 -0500 Reply to Does hemophilia run in your family, or were you the first to be diagnosed?

My loved one was the first to be diagnosed. We got tested in my family and they are an outlier! It definitely was a surprise to us all.

]]> a9986f482793f18029704915b0f31377 Community Member replied to the discussion What does hemophilia treatment access look like where you live? in the forum Hemophilia Treatment https://hemophilianewstoday.com/forums/forums/topic/what-does-hemophilia-treatment-access-look-like-where-you-live/#post-12727 Thu, 01 Oct 2026 18:54:51 -0500 Reply to What does hemophilia treatment access look like where you live?

Thank you for sharing such an honest picture of what accessing hemophilia care can look like in the Philippines. Having to wait for a bleed, search for available factor, and navigate a complicated assistance process places an enormous burden on families, especially when treatment is urgently needed.

Your response reminded me of this recent…

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]]> 19bf80c34b91b1339e50451ba062e535 Community Member started the discussion What has your family had to do to access hemophilia treatment? in the forum Hemophilia Treatment https://hemophilianewstoday.com/forums/forums/topic/what-has-your-family-had-to-do-to-access-hemophilia-treatment/ Thu, 01 Oct 2026 18:50:44 -0500 What has your family had to do to access hemophilia treatment?

In this new Guest Voice column, Maria shares what it took to secure treatment for her son Lean in the Philippines—from calling hospitals and organizations to lining up at government offices as early as 3 a.m. for assistance.

It’s a powerful reminder that accessing treatment can involve far more than getting a prescription.

What has accessing…

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]]> 0c8c890881ae73231d92b153269e7f86 Community Member replied to the discussion What does hemophilia treatment access look like where you live? in the forum Hemophilia Treatment https://hemophilianewstoday.com/forums/forums/topic/what-does-hemophilia-treatment-access-look-like-where-you-live/#post-12725 Wed, 30 Sep 2026 08:09:14 -0500 Reply to What does hemophilia treatment access look like where you live?

Hemophilia Care in the Philippines?

– Support comes exclusively from NGOs, government cannot be bothered not unless there’s a kickback or it will make *politician’s name here* look good.

– You need to wait for a bleed to get factor – the amount you get is also bleed specific or dependent on “how much is in stock”

– Medicine can only be…

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]]> 4cdeea8e45592a4ac15938b6b27f7f1c Community Member started the discussion What does hemophilia treatment access look like where you live? in the forum Hemophilia Treatment https://hemophilianewstoday.com/forums/forums/topic/what-does-hemophilia-treatment-access-look-like-where-you-live/ Fri, 25 Sep 2026 22:38:23 -0500 What does hemophilia treatment access look like where you live?

I’ve been thinking a lot about what we really mean when we say someone has “access” to treatment.

My husband, Jared, has severe hemophilia B. We keep a small supply of factor in our refrigerator, but we’ve often had to depend on humanitarian aid and limited local supplies. Once that factor is used, replacing it can mean jumping through hoops…

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]]> bebaea8f7eea21530bb290bb5f0ec364 Community Member started the discussion Does hemophilia run in your family, or were you the first to be diagnosed? in the forum Hemophilia Inheritance https://hemophilianewstoday.com/forums/forums/topic/does-hemophilia-run-in-your-family-or-were-you-the-first-to-be-diagnosed/ Wed, 16 Sep 2026 14:19:24 -0500 Does hemophilia run in your family, or were you the first to be diagnosed?

For some people, hemophilia has been part of their family’s story for generations. For others, the diagnosis comes as a complete surprise, with no known family history.

Does hemophilia run in your family, or were you (or your loved one) the first to be diagnosed? Did the diagnosis lead other relatives to get tested or recognize signs they had…

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]]> 6b980698b6fda762e38b194583a620fb Community Member replied to the discussion Forum Improvements - Feedback Appreciated! in the forum Using Our Forums https://hemophilianewstoday.com/forums/forums/topic/forum-improvements-feedback-appreciated/#post-12718 Mon, 14 Sep 2026 08:28:01 -0500 Reply to Forum Improvements - Feedback Appreciated!

Hi! It would be great if we had easier access to the platform. I find a sign-up cumbersome especially for first-timers. Aside from that though, would love to see channels or groups for special interests, hobbies or life stages so the world won’t feel so small or different. Maybe add in some daily/weekly conversation starters too.. (top of my…

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]]> 3c661aa7f82696965e9e82cfcaf620f7 Community Member started the discussion Forum Improvements - Feedback Appreciated! in the forum Using Our Forums https://hemophilianewstoday.com/forums/forums/topic/forum-improvements-feedback-appreciated/ Wed, 09 Sep 2026 22:25:03 -0500 Forum Improvements - Feedback Appreciated!

Hi everyone, the Hemophilia News Today team is looking to make some improvements to how the forums and groups on this site function. Our goal is to improve the experience for all you so that participating in this community is easier and more valuable. If you have any specific suggestions for improvement, complaints, or experiences you’d like us…

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]]> e6035eada843e83a2c9cf4a018771dc3 Community Member posted an update: What’s one adjustment you’ve made because of hemophilia […] https://hemophilianewstoday.com/forums/activity/p/1258/ Wed, 15 Jul 2026 18:14:09 -0500 What’s one adjustment you’ve made because of hemophilia that people without it probably wouldn’t think twice about? ]]> 0 7f1149309e875abcdd50aed51054b593 Community Member posted an update: What's a "bad" or "banned" activity that you still […] https://hemophilianewstoday.com/forums/activity/p/1230/ Wed, 17 Jun 2026 10:06:34 -0500 What’s a “bad” or “banned” activity that you still do in spite of hemophilia? And how do you keep yourself safe, yet happy?

To start: I like martial arts and boxing. To keep safe, I gauge my body and I don’t force the movements. I love training and I avoid sparring.

]]> 1 abd412a2c4c9d24054006088385a7c35 Community Member replied to the discussion Treatment Options in the forum Hemophilia Treatment https://hemophilianewstoday.com/forums/forums/topic/treatment-options/#post-12685 Mon, 08 Jun 2026 22:16:56 -0500 Reply to Treatment Options

Hi Caz, I’ve been looking into Hympavzi (Marstacimab). Anyone else here has experience about it? Specifically for Severe Haemophilia B with previous inhibitor but not undetectable. Including the use of Cevenfacta as prophylaxis for bridge and treatment for breakthrough bleeds,

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Jan 2023 14:20:29 -0600 1 4e939d7d45d93cd1f61850dcbf233f08 Community Member updated their profile https://hemophilianewstoday.com/forums/activity/p/971/ Fri, 06 Jan 2023 16:12:28 -0600 2 0f344623fbb6015b8b4a2bd3c1466b8e Community Member became a registered member https://hemophilianewstoday.com/forums/activity/p/943/ Thu, 10 Nov 2022 13:09:45 -0600 0 b321189815bbb623449f6bba7f3fd6c1 Community Member replied to the discussion A new class of hemophilia drugs. in the forum Hemophilia Treatment https://hemophilianewstoday.com/forums/forums/topic/a-new-class-of-hemophilia-drugs/#post-12421 Fri, 07 Oct 2022 14:53:52 -0500 Reply to A new class of hemophilia drugs.

Milos, there is no anti-activated protein C (anti-APC) drug on the on the market in any country. ApcinteX Ltd and Centessa Pharmaceuticals are testing (phase 1/2 clinical trial) an anti-APC drug called SerpinPC (clinical trial # NCT04073498), with results expected in October 2023. See press release… Read more

]]> e64b5a6ad9762c6ea5b4cdd7cf5505d4 Community Member became a registered member https://hemophilianewstoday.com/forums/activity/p/926/ Wed, 05 Oct 2022 12:43:42 -0500 0 5eaa7c1407d22b2db18c5a789ea213ff Community Member replied to the discussion A new class of hemophilia drugs. in the forum Hemophilia Treatment https://hemophilianewstoday.com/forums/forums/topic/a-new-class-of-hemophilia-drugs/#post-12409 Sat, 01 Oct 2022 16:06:15 -0500 Reply to A new class of hemophilia drugs.

Thank you, Cazandra.

]]> 55ba6b438bb0048aab5fdcdeaac12228 Community Member became a registered member https://hemophilianewstoday.com/forums/activity/p/921/ Wed, 14 Sep 2022 19:37:19 -0500 0