My Hemophilia Life
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Support your loved ones if they are suffering from Hemophilia blood disease.
01/12/2023
Hemophilia Breakthrough: New Gene Therapies Could Offer a Cure
Researchers are developing new gene therapies for hemophilia A and B that are more efficient and less expensive than current therapies: A new hope for a cure Hemophilia A and B are genetic bleeding disorders that affect males. They are caused by mutations in the genes that code for factor VIII and factor IX, respectively, […]
Good news for Hemophilia Patients - New Gene Therapies Could Offer a Cure With continued progress, we can hope to one day find a cure for hemophilia A and B and improve the lives of everyone affected by these conditions.
29/11/2023
Researchers create novel hemophilia B gene treatment
Researchers create novel hemophilia B gene treatment, offering a fresh prospect for recovery. Males are affected by an uncommon inherited bleeding condition called hemophilia B. A mutation in the gene that codes for factor IX, a clotting factor necessary for healthy blood coagulation, is the cause of it. Those who have hemophilia B are susceptible […]
Researchers create novel hemophilia B gene treatment To ascertain the safety and effectiveness of gene therapy in people, further research is required as it is still in its early phases of development.
29/11/2023
FDA grants orphan drug status to TI-168 for hemophilia A inhibitors
Baudax Bio‘s investigational regulatory T-cell therapy, TI-168, has received orphan drug designation from the U.S. Food and Drug Administration (FDA) for the treatment of hemophilia A with inhibitors. Orphan drug status is granted to therapies addressing rare conditions affecting fewer than 200,000 people in the U.S. This designation offers various benefits, including tax credits, clinical […]
FDA approves orphan drug status to TI-168 for hemophilia A inhibitors Baudax Bio's investigational regulatory T-cell therapy, TI-168, has received orphan drug designation from FDA for the treatment of hemophilia A with inhibitors.
26/11/2023
The FDA approves the use of a plasma product to track FVIII activity
The FDA in the United States has approved CRYOcheck Factor VIII Deficient Plasma with VWF, a produced plasma product from Precision BioLogic, for use in laboratories. Utilizing blood samples, this product can be used to identify factor VIII (FVIII) insufficiency. Normal blood coagulation requires the clotting factor FVIII. Due to an FVIII deficiency, hemophilia A […]
The FDA approved the use of a plasma product to track FVIII activity In the US, CRYOcheck Factor VIII Deficient Plasma with VWF is currently accessible in laboratories. In the upcoming months, it will extensively accessible.
17/11/2023
Can you live a normal life with hemophilia?
A bleeding ailment known as hemophilia affects more than 400,000 people globally. It is brought on by a lack of one of the proteins called clotting factors, which aid in blood clotting. People who have hemophilia are therefore susceptible to severe bleeding, which may be fatal. More than half of hemophiliac patients conceal their symptoms, […]
Can you live a normal life with hemophilia? - My Hemophilia Life A bleeding ailment known as hemophilia affects more than 400,000 people globally. It is brought on by a lack of one of the proteins called clotting factors, which aid in blood clotting. People who have hemophilia are therefore susceptible to severe bleeding, which may be fatal. More than half of…
25/10/2023
Socio-economic problems of hemophilia
Hemophilia is a rare congenital bleeding disease caused by an X chromosome-linked deficiency in coagulation factors 8 in hemophilia A or factors 9 in hemophilia B. This is a rare disorder and is characterized by spontaneous and potentially life-threatening bleeding episodes. It is a life disorder associated with physical, emotional, economic, and social problems for […]
Social-economic problems of hemophilia | My Hemophilia Life Patients with hemophilia are affected in their personal as well as professional lives. Especially the ones with inhibitors face more difficulties in managing their life.
21/10/2023
The Impact of Factor 8 Deficiency on Your Daily Life: Coping Strategies and Support
Welcome to our blog on “The Impact of Factor 8 Deficiency on Your Daily Life: Coping Strategies and Support.” Living with factor 8 deficiency can be challenging, but this condition doesn’t define you. In this empowering article, we will explore practical coping strategies and highlight the importance of finding support from others facing similar challenges. […]
The Impact of Factor 8 Deficiency on Your Daily Life: Coping Strategies and Support - My Hemophilia Life Welcome to our blog on "The Impact of Factor 8 Deficiency on Your Daily Life: Coping Strategies and Support." Living with factor 8 deficiency can be challenging, but this condition doesn't define you. In this empowering article, we will explore practical coping strategies and highlight the importanc...
01/01/2023
May the new year bring you peace, joy, and happiness. Happy New Year!
25/12/2022
Wishing you all the happiness your holiday can hold. Merry Christmas!
Christmas season has always been stressful for me. I live in Florida, but my family lives in the arctic tundra of Illinois and Wisconsin. I can’t understand why my mom and I travel north instead of having everyone come to us in sunny Florida, but as I often say, “It is what it is.” As I write this, in a few days we’ll be heading north, even though a blizzard threatens to derail our plans....
https://www.myhemophilialife.com/2022/12/23/finding-hope-with-hemophilia-this-holiday-season/
23/12/2022
A committee of the European Medicines Agency (EMA) has issued a positive opinion recommending the one-time gene therapy etranacogene dezaparvovec be granted conditional marketing authorization to treat appropriate adults with hemophilia B. The recommendation from the EMA’s Committee for Medicinal Products for Human Use (CHMP) will now be reviewed by the European Commission, which will issue a final decision that applies to all EU member states, as well as Iceland, Liechtenstein, and Norway…...
https://www.myhemophilialife.com/2022/12/23/hem-b-therapy-etranacogene-dezaparvovec-wins-thumbs-up/
HEM B Therapy Etranacogene Dezaparvovec Wins Thumbs-up A committee of the European Medicines Agency (EMA) has issued a positive opinion recommending the one-time gene therapy etranacogene dezaparvovec be granted conditional marketing authorization to treat appropriate adults with hemophilia B. The recommendation from the EMA’s Committee for Medicinal ...
22/12/2022
The European Medicines Agency’s Committee for Medicinal Products for Human Use (CHMP) has recommended Hemlibra’s (emicizumab) approval be expanded to include people with moderate hemophilia A without inhibitors. “We’re very pleased that the CHMP’s recommendation brings us closer to potentially transforming the day-to-day lives of people in the EU living with moderate hemophilia A,” said Levi Garraway, MD, PhD, Roche’s chief medical officer and head of global product development, in a…...
https://www.myhemophilialife.com/2022/12/21/expanding-hemlibras-eu-approval-for-moderate-hem-a-recommended/
Expanding Hemlibra’s EU Approval for Moderate Hem A Recommended The European Medicines Agency’s Committee for Medicinal Products for Human Use (CHMP) has recommended Hemlibra’s (emicizumab) approval be expanded to include people with moderate hemophilia A without inhibitors. “We’re very pleased that the CHMP’s recommendation brings us closer to potenti...
As we prepare to celebrate Christmas, I can’t help but remember a particular year in the MacDonald household. In 2013, my youngest son, Caeleb, couldn’t catch a break from hemophilia. Constant spontaneous bleeding episodes into his right knee and ankle kept my boy in the hospital more often than not. We spent almost every holiday that year in a room on the sixth floor of the…...
https://www.myhemophilialife.com/2022/12/22/how-my-family-found-joy-while-spending-christmas-in-the-hospital/
Recruitment is now open for Own Your Path- a program for young adult males with hemophilia who are currently in the transition years between 18-29. We know that maintaining adherence to a prophy regimen can have short and long -term health benefits. This program focuses on helping participants be successful by focusing on education, health coaching, skill building, and relationship building, all within an app-based environment that includes participation incentives. ...
https://www.myhemophilialife.com/2022/12/21/nhfs-own-your-path-program-begins-recruitment/
21/12/2022
I am not a fan of roller coasters. Dropping straight down in a car on a wooden track makes me feel like my heart has left my body. Why would anyone want to feel that way? However, I have one exception: the Rock ‘n’ Roller Coaster Starring Aerosmith at Disney World. The speed, corkscrew turns, music, and neon signs depicting a superfast ride on the highway are enough to rev up a person’s heart rate....
https://www.myhemophilialife.com/2022/12/21/the-roller-coaster-ride-of-parenting-a-child-with-hemophilia/
The Roller-coaster Ride of Parenting a Child With Hemophilia I am not a fan of roller coasters. Dropping straight down in a car on a wooden track makes me feel like my heart has left my body. Why would anyone want to feel that way? However, I have one exception: the Rock ‘n’ Roller Coaster Starring Aerosmith at Disney…
With 2022 soon coming to a close, I can’t help but wonder what kind of year is going to take its place. So much has happened in the past three years, since my daughter, Cittie, was born. Yet when I look at my pictures then, I don’t feel like I’m looking at a different person. I’m only reminded of the speed of time’s passage, and the fleeting nature of moments when I catch a glimpse of my daughter — now a bubbly and chatty preschooler — and realize how quickly she’s grown....
https://www.myhemophilialife.com/2022/12/19/will-2023-bring-less-struggle-and-improved-hemophilia-management/
16/12/2022
Last week, I set out in my car to donate some household items to Goodwill. I’ve been there probably a dozen times, but this time I drove past the Goodwill building twice. Why? Because my community is missing signs. All kinds of signs. Street signs, building signs, and even stop signs were blown away by Hurricane Ian, which hit southwestern Florida on Sept....
https://www.myhemophilialife.com/2022/12/16/how-to-recognize-the-signs-of-a-bleeding-disorder/
How to Recognize the Signs of a Bleeding Disorder Last week, I set out in my car to donate some household items to Goodwill. I’ve been there probably a dozen times, but this time I drove past the Goodwill building twice. Why? Because my community is missing signs. All kinds of signs. Street signs, building signs, and even stop…
16/12/2022
SerpinPC, a potential treatment for all types of hemophilia, from the drug development pipeline at Centessa Therapeutics, was found to be safe and to reduce patients’ bleeding episodes for up to 1.5 years. In fact, the therapy candidate has the potential to nearly “zero out” the number of bleeds in people with severe hemophilia A or B. That’s according to new data from an open-label extension of…...
https://www.myhemophilialife.com/2022/12/16/serpinpc-found-to-ease-hemophilia-bleeding-for-1-5-years-in-trial-new-data-show-therapy-is-safe-can-nearly-zero-out-bleeds/
SerpinPC Found to Ease Hemophilia Bleeding for 1.5 Years in Trial | New Data Show Therapy Is Safe, Can Nearly ‘Zero Out’ Bleeds SerpinPC, a potential treatment for all types of hemophilia, from the drug development pipeline at Centessa Therapeutics, was found to be safe and to reduce patients’ bleeding episodes for up to 1.5 years. In fact, the therapy candidate has the potential to nearly “zero out” the number of blee...
16/12/2022
Healthcare Written by Jeff Courtney, December 16, 2022 A gene therapy for Haemophilia B has moved a step closer to being licensed for use in the UK. Today, the CHMP has announced a positive opinion for EtranaDez (Etranacogene Dezaparvovec) which will be marketed as Hemgenix. This product was developed by Uniqure and will be marketed by CSL Behring. From here the European Commission will usually accept the recommendation and a MHRA license for use in Great Britain can then be granted on that basis....
https://www.myhemophilialife.com/2022/12/16/gene-therapy-for-haemophilia-b-to-be-licensed-next-year/
Gene Therapy for Haemophilia B to be licensed next year Healthcare Written by Jeff Courtney, December 16, 2022 A gene therapy for Haemophilia B has moved a step closer to being licensed for use in the UK. Today, the CHMP has announced a positive opinion for EtranaDez (Etranacogene Dezaparvovec) which will be marketed as Hemgenix. This product was develop...
Organization set to look back while moving ahead during historic year NEW YORK — In 2023, the National Hemophilia Foundation (NHF) reaches its jubilee year with a special 75th anniversary celebration. To note this historic milestone, NHF is launching a year-long campaign entitled “The Red Thread,” which will trace NHF’s long history of providing the inheritable blood and bleeding disorders community with resources and programs related to advocacy, education, and research. ...
https://www.myhemophilialife.com/2022/12/15/test-news-article-national-hemophilia-foundation/
The positive safety and efficacy profile of Hemgenix (etranacogene dezaparvovec) — the first and only approved gene therapy for adults with hemophilia B — was sustained for two years, according to data from a Phase 3 trial, CSL Behring has announced. Findings were generally similar to previous trial analyses, which found the treatment to be safe, with an ability to lower bleeding rates, and enable patients to cease using preventive factor replacement therapies....
https://www.myhemophilialife.com/2022/12/14/hemgenix-gene-therapy-benefits-sustained-for-2-years-in-phase-3-trial-hope-b-data-show-gene-therapy-hemgenixs-benefits-in-2-year-analysis/
In the Christian tradition, the season of Advent occurs for the four weeks leading to Christmas. Through the time leading up to the birth of Christ, we take a fearless moral inventory and address the issues that keep us from experiencing hope and contentment. I often equate Advent as a time to do the necessary housecleaning to prepare for the arrival of a special guest....
https://www.myhemophilialife.com/2022/12/15/preparing-for-christmas-and-for-complications-of-hemophilia/
14/12/2022
On October 28, 2022, thirty-two bleeding disorders (BD) community stakeholders met to learn about BD in women, discuss gaps in care and research for women, and read, discuss, and adopt the research agenda for women with BD created through Hemophilia Federation of America’s Females in Research Sharing and Translation (FIRST) project. Twenty-four stakeholders met in person in Leesburg, VA and eight stakeholders joined virtually over Zoom....
https://www.myhemophilialife.com/2022/12/14/summary-of-hfas-convening-for-research-on-women-with-bleeding-disorders/
Summary of HFA’s Convening for Research on Women with Bleeding Disorders On October 28, 2022, thirty-two bleeding disorders (BD) community stakeholders met to learn about BD in women, discuss gaps in care and research for women, and read, discuss, and adopt the research agenda for women with BD created through Hemophilia Federation of America’s Females in Research Shar...
An excellent sitcom in the late 1970s and early ’80s featured the character Herb Tarlek, played by Frank Bonner. Fans of “WKRP in Cincinnati” will remember how Tarlek, a sales manager, would do anything necessary to secure advertising for his radio station, such as soliciting ads from outrageous companies like Shady Hills Rest Home or Gone with the Wind Estates....
https://www.myhemophilialife.com/2022/12/14/look-for-the-good-reputation-rather-than-the-hard-sell-for-supplies/
Healthcare Written by Aaron Dennis, December 13, 2022 Carly, 32, lives with her husband Nick in Devon. They have a busy house; with daughters Leah (6) and Ella (4), who has type 3 von Willebrand disorder (VWD), as well as an excitable boxer dog. Since Ella was diagnosed, Carly has found it helpful to write down her experiences about coming to terms with her daughter’s bleeding disorder, and how they grow to manage it as a family....
https://www.myhemophilialife.com/2022/12/13/living-with-von-willebrand-disorder-part-6/
12/12/2022
I recently bought an unexpectedly large number of indoor plants. After previously having just one living room plant and a dying cactus, I suddenly had an epiphany about redecorating with multiple houseplants. I managed to create a relaxing sanctuary, and now every day feels like a tiny vacation! Since my husband, Jared, and I both work from home, we felt that home improvements were essential to our well-being....
https://www.myhemophilialife.com/2022/12/12/taking-care-of-plants-helps-me-manage-stress-and-anxiety/
Taking Care of Plants Helps Me Manage Stress and Anxiety I recently bought an unexpectedly large number of indoor plants. After previously having just one living room plant and a dying cactus, I suddenly had an epiphany about redecorating with multiple houseplants. I managed to create a relaxing sanctuary, and now every day feels like a tiny vacation! Sin...
12/12/2022
Hemophilia of Georgia Celebrates 50 Years of Service to the Bleeding Disorder Community
By Coleen Lou, Director of Communications
Published December 12, 2022
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https://www.myhemophilialife.com/2022/12/12/hemophilia-of-georgia-celebrates-50-years-of-service-to-the-bleeding-disorder-community-publications-hemophilia-of-georgia/
Hemophilia of Georgia Celebrates 50 Years of Service to the Bleeding Disorder Community > Publications > Hemophilia of Georgia Hemophilia of Georgia Celebrates 50 Years of Service to the Bleeding Disorder Community By Coleen Lou, Director of Communications Published December 12, 2022 Happy New Year! We are very excited to announce that 2023 marks the 50th anniversary of the founding…
12/12/2022
Holiday Happenings at Callaway Gardens
By Kim Williams, Senior Director of Client Engagement
Published December 12, 2022
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https://www.myhemophilialife.com/2022/12/12/holiday-happenings-at-callaway-gardens-publications-hemophilia-of-georgia/
Holiday Happenings at Callaway Gardens > Publications > Hemophilia of Georgia Holiday Happenings at Callaway Gardens By Kim Williams, Senior Director of Client Engagement Published December 12, 2022 On December 3, Hemophilia of Georgia (HoG) offered families in the inherited bleeding disorders community of Georgia an opportunity to celebrate the holiday season…
12/12/2022
New Bike Over the Holidays?
By Leigh Carpenter, RPh, Vice President of Pharmacy Operations
Published December 12, 2022
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https://www.myhemophilialife.com/2022/12/12/new-bike-over-the-holidays-publications-hemophilia-of-georgia/
New Bike Over the Holidays? > Publications > Hemophilia of Georgia New Bike Over the Holidays? By Leigh Carpenter, RPh, Vice President of Pharmacy Operations Published December 12, 2022 Did someone in your family get a new bike this holiday season? Bicycles, skateboards, in-line skates, and scooters can be dangerous without proper…
Open Enrollment for ACA Marketplace Insurance Ends January 15
By Michelle Lowe, VP of Clinical Services
Published December 12, 2022
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https://www.myhemophilialife.com/2022/12/12/open-enrollment-for-aca-marketplace-insurance-ends-january-15-publications-hemophilia-of-georgia/