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توي خلصت احد أفلام المخرج (الفريد هتشكوك) Shadow of a Doubt ، وهو فلم رائع جداً . وهذا ترتيبي لأفلامه للان..

NFDf ⎐كُـود⎐كوبِون⎐خـِصم⎐ 🌈 عرض جميل ⎐ايهرب⎐ايهيرب اهرب ⊵IPY1290⊴ ⎐نون⎐ ⊵STC9⊴ ⎐مفارش⊴الحبيب⎐ ⊵CB11⊴

We are looking for more participants. We are partnering with a healthcare market research company called MedPanel to help encourage our members to participate in a paid, double-blinded, 30-minute online survey. The goal of the survey is to help MedPanel’s client, a globally focused rare disease research company, gather valuable insights from individuals like you living with Fabry disease. We are interested in learning about your patient journey and experience with Pegunigalsidase alfa (Elfabrio). As compensation for your time and input, MedPanel will issue a check incentive of $75 following completion of the survey and verification of your Fabry status. If you are interested in this opportunity, please select the link below to complete a brief screening questionnaire to determine your eligibility to participate in the survey. This screening should take only 3 to 5 minutes. Then, if you qualify, you will be redirected to the survey. medpanel.qualtrics.com/jfe/f… [Kindly note: you may receive this survey invitation from multiple sources; please participate only once, as compensation will be provided for a single submission only.] It's important to note that this study does not involve receiving any treatments; MedPanel and the sponsoring company are solely interested in your honest perspectives and experiences. Also, please note that the study is double-blinded, and MedPanel will never share your identity with the sponsoring company. All data received by you in the survey will be analyzed only in aggregate and is anonymous. Any of your contact information MedPanel receives from us is held by them confidentially and will be used only to reach out to you about the opportunity. Thank you very much for your interest. If you have any questions or concerns, please don't hesitate to contact Pallavee at pallavee.kapoor@medpanel.com. Pallavee Kapoor Assistant Vice President Recruitment and Operations MedPanel, Inc. Thank you for your support! The NFDF Team Contact the NFDF by email at info@fabrydisease.org or by phone at 800-651-9131. #Fabry #FabryDisease #fabrydiseaseawareness #FabryAwareness #influenceyourfabryoutcomes #nationalfabrydiseasefoundation

Nigeria joins the global flying disc family. It’s official, Nigeria has joined the global flying disc community after the Nigeria Flying Disc Federation (NFDF) was inducted as the country’s recognized national federation.

Big moment for Ultimate Frisbee in Nigeria. On Thursday, May 7, the Nigeria Flying Disc Federation (NFDF) was officially inducted by the All Africa Disc Federation as Nigeria’s recognized national federation following approval by the World Flying Disc Federation Congress.

The National Fabry Disease Foundation is excited to host Dr. Uma Ramaswami on Thursday May 7th at 5:00 pm ET for the next installment of our Notable Publication Webinar Series. Please note this is a time change from the last announcement. Each virtual meeting is approximately 60 minutes. Invited speakers will spend about 30 minutes breaking down the key points of the publication, followed by time for questions and discussion. On Thursday, May 7th at 5:00pm ET we will be joined by Dr. Uma Ramaswami as she reviews the article "The use and performance of lyso-Gb3 for the diagnosis and monitoring of Fabry disease: A systematic literature review," for which she is the lead author. Register for the meeting here: us02web.zoom.us/meeting/regi… If you'd like to access the publication before the presentation, you can find it online: sciencedirect.com/science/ar… Details about the schedule, speakers, publications, and registration links are available on our webinar website: tinyurl.com/nfdfwebinar The primary audience for these meetings is individuals with Fabry disease, their family members, and caregivers. Primary attendees are invited to ask questions and actively participate in the webinars. We also encourage registration and attendance by others who are connected to the Fabry disease community as “Other Attendees.” Other attendees may include Fabry healthcare providers and clinical staff, support organization representatives, and industry representatives. They participate as observers only. Webinars will be recorded and available to view on our YouTube channel at youtube.com/thenfdf. We'll see you soon, The NFDF Team Contact the NFDF by email at info@fabrydisease.org or by phone at 800-651-9131. #fabry #fabrydisease #fabrydiseaseawareness #fabryawareness #influenceyourfabryoutcomes #nationalfabrydiseasefoundation

Yesterday, we published our May 2026 edition of the Fabry Focus e-newsletter, "What's Happening in May 2026?" The first of many events and notices in the newsletter is tonight. If you subscribe to our newsletter and have not received it, please check your spam folder. If it's not in the spam folder, please subscribe again from the second button on our Link Tree at linktr.ee/thenfdf. The newsletter is located at conta.cc/4u1JLEF. Best wishes, The NFDF Team #Fabry #FabryDisease #fabrydiseaseawareness #FabryAwareness #influenceyourfabryoutcomes #nationalfabrydiseasefoundation #FabryDiseaseAwarenessMonth

One of the National Fabry Disease Foundation's mottos is Living Better Longer. To celebrate Fabry Disease Awareness Month this year, we shared expert tips on how to live well with Fabry disease via our Fabry Focus email newsletter and social media channels. Thank you for joining us! We hope you have found one or more of the recommendations shared this month helpful. We wish you all long, healthy, and happy lives. If you value our many programs and services and enjoyed this content, please consider making a charitable donation to the National Fabry Disease Foundation to support these and other educational programs. If you are outside the United States, please make a donation to your country's Fabry disease support organization instead. As an IRS 501(c)(3) non-profit charitable organization, the NFDF relies on philanthropic support from individuals like you. Contributions of all sizes add up to make a tremendous difference. Please make a donation today. Donations are accepted by mail to: National Fabry Disease Foundation 144 E King St, Unit 1419, Hillsborough, NC 27278 Consider saving a stamp and donating online or via text. Donate Online: tinyurl.com/Fabry-Awareness2… All donation options are listed in our Ways to Give flyer at fabrydisease.org/images/Refe… Thank you for participating in Fabry Disease Awareness Month, The NFDF Team Contact the NFDF by email at info@fabrydisease.org or by phone at 800-651-9131. #Fabry #FabryDisease #fabrydiseaseawareness #FabryAwareness #influenceyourfabryoutcomes #nationalfabrydiseasefoundation #FabryDiseaseAwarenessMonth

As we continue to celebrate Fabry Disease Awareness Month, we're sharing expert tips on how to live better and longer with Fabry disease. Today's topic is about managing the renal (kidney) manifestations of Fabry disease. Many adults with Fabry disease are followed by a nephrologist, a doctor who specializes in the kidney. Recommendation #21 Manage kidney disease Data from the Fabry Registry shows that a high percentage of adults with Fabry disease (FD) have chronic kidney disease at some age. Across all ages, 72% of men and 87% of women have CKD stages 1 or 2, while the remainder (28% and 13%) had more advanced disease (CKD stage 3 ). The risk of kidney disease gets higher with age. Fabry Registry data show that of adults age 40 or older, 45% of men and 20% of women had advanced kidney disease. Kidney function should be evaluated at least every year in adults with FD. Blood and urine tests are used together to assess kidney health. The kidneys act as a filter. To measure how well they are working, a blood test is used to estimate your Glomerular Filtration Rate or eGFR, which determines the stage of a person's kidney disease. The presence of albumin in the urine (albuminuria) is often one of the first signs of kidney disease in FD. To monitor FD, doctors measure the total protein and protein type ratios in a urine sample. Fabry-specific treatment can improve kidney outcomes, especially when initiated before irreversible organ damage. In addition, adjunct treatments for the kidneys may be needed, including medication(s) and/or diet and lifestyle changes. Talk to your doctor for individualized recommendations. References: Hopkin 2016 (drive.google.com/.../1xNOY1Q…), Ortiz 2008 (pubmed.ncbi.nlm.nih.gov/1817…) Thank you for participating in Fabry Disease Awareness Month, The NFDF Team Contact the NFDF by email at info@fabrydisease.org or by phone at 800-651-9131. #Fabry #FabryDisease #fabrydiseaseawareness #FabryAwareness #influenceyourfabryoutcomes #nationalfabrydiseasefoundation #FabryDiseaseAwarenessMonth

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As we continue to celebrate Fabry Disease Awareness Month, we're sharing expert tips on how to live well with Fabry disease. Today's tip is about managing the cardiac aspects of Fabry disease. Adults with Fabry disease should discuss their individualized monitoring plan with their healthcare team. If you'd like to learn more about cardiac monitoring in Fabry disease, please consider joining us tonight, Monday, 4/27 at 7:00 pm ET, for a webinar with cardiologist Dr. John Jefferies. Register at us02web.zoom.us/meeting/regi…. Recommendation #19 Manage your heart disease Individuals with Fabry disease (FD) often experience heart problems in adulthood, including abnormal EKG, arrhythmias, left ventricular hypertrophy (LVH), and hypertrophic cardiomyopathy, which can lead to heart failure. Every adult with Fabry disease, regardless of symptoms or gender, should continue to be evaluated by a cardiologist periodically, even after having a normal evaluation. Tell your doctor if you experience symptoms of cardiovascular disease, including: shortness of breath, chest pain, heart palpitations (skipped beats or racing heart), feeling lightheaded/dizzy, fainting, or swelling of the feet/ankles. Fabry-specific treatment is shown to decrease cardiac events overall. However, the best cardiac outcomes are reported when treatment is started early, before heart damage occurs. People with FD with evidence of heart disease may require additional therapies to treat their specific problem(s). Some individuals with FD are prescribed medication(s) and/or have a small device implanted to maintain their heart rhythm (a cardiac pacemaker), or an Implantable Cardioverter-Defibrillator (ICD), which is a combined pacemaker-defibrillator. In advanced stages of FD, cardiac disease can progress to heart failure. Adults with FD-related heart failure have successfully received heart transplants. Read more about Jerry Walter's transplant story at fabrydiseasenews.com/columns… References: Ortiz 2018 (sciencedirect.com/science/ar…) , Linhart 2020 (onlinelibrary.wiley.com/doi/…) , Kalra 2024 (youtube.com/watch?v=gRuNX_T4…) Thank you for participating in Fabry Disease Awareness Month, The NFDF Team Contact the NFDF by email at info@fabrydisease.org or by phone at 800-651-9131. #Fabry #FabryDisease #fabrydiseaseawareness #FabryAwareness #influenceyourfabryoutcomes #nationalfabrydiseasefoundation #FabryDiseaseAwarenessMonth

As we continue to celebrate Fabry Disease Awareness Month, we're sharing expert tips on how to live better and longer lives with Fabry disease. Today, we're sharing one of Dr. Staci Kallish's tips for living well with Fabry disease from her presentation at the NFDF's 2025 Fabry Family Conference, to "find benefit in community". Recommendation #18 Find benefit in community Sharing what you are going through with people in the Fabry community and with others in your life is really important. Talking to people who don't just understand what you're going through, but can also share the experiences that helped them, may be helpful to you. Try to connect with others who have Fabry disease (FD). Consider talking to your family members who have FD, asking your Fabry doctor to connect you with others, and/or joining a Fabry Facebook Group. When you are comfortable, share your struggles with those around you and ask for support. Find your "tribe" of friends who will help you find the nearest air conditioning if you're overheating or a bathroom if nature calls suddenly. Connect with Fabry disease patient organizations such as the National Fabry Disease Foundation (fabrydisease.org), Fabry Support & Information Group, Canadian (fabry.org) Canadian Fabry Association (fabrycanada.com/) or Fabry International Network (fabrynetwork.org/). Consider participating in virtual or in-person events! Reference: Kallish 2025 (youtube.com/watch?v=pe7NE3aA…) Thank you for participating in Fabry Disease Awareness Month, The NFDF Team Contact the NFDF by email at info@fabrydisease.org or by phone at 800-651-9131. #Fabry #FabryDisease #fabrydiseaseawareness #FabryAwareness #influenceyourfabryoutcomes #nationalfabrydiseasefoundation

As we continue to celebrate Fabry Disease Awareness Month, we're sharing expert tips on how to live better and longer lives with Fabry disease. For those who experience pain crises or periodic worsening of pain symptoms, we recommend paying attention to the events and circumstances that precede the flare. Identifying which factors trigger your symptoms can help you avoid them in the future. Recommendation #16 Identify your triggers "Behavior management is crucial in the management of pain [in Fabry disease]. The most important aspect of this is the avoidance of triggers." Hopkin 2016 People with Fabry disease can experience a worsening of symptoms or a pain crisis when they are triggered by stress, extreme temperature, exercise, fever, and other less common triggers. Heat is a trigger for many living with FD. Avoid overheating by staying out of the hottest conditions, minimizing strenuous activities, and/or using water spray as a surrogate for sweat. Notice and address your triggers. If your feet are getting hot or painful, promptly remove socks and shoes. Cool down with water, ice, and a fan. Treat fevers immediately. "Being in a warm or hot environment doesn't affect me too much if I am not doing strenuous activities. Strenuous activities in the heat can cause overheating, pain, achiness, weakness, fatigue, fevers, and anxiety." Jerry Walter Reference: Hopkin 2016 (IwY2xjawRVzydleHRuA2FlbQIxMABicmlkETFqYnB5c3pjUGVQNmhHNkRZc3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHtAtTR1eFNZy0NmbL6FTkjxu8Id4fXESMKyL8E5jNYoZEIs_MjI0gr72MdmV_aem_AyLAax15jfUkjyjzzXZcsA) Thank you for participating in Fabry Disease Awareness Month, The NFDF Team Contact the NFDF by email at info@fabrydisease.org or by phone at 800-651-9131. #Fabry #FabryDisease #fabrydiseaseawareness #FabryAwareness #influenceyourfabryoutcomes #nationalfabrydiseasefoundation #FabryDiseaseAwarenessMonth

As we continue to celebrate Fabry Disease Awareness Month, we're sharing expert tips on how to live better and longer lives with Fabry disease. Pain is a hallmark of Fabry disease. Fabry-related pain can be extremely distressing and is one of the significant determinants affecting patients' quality of life. Recommendation #15 Manage Fabry-related pain Pain is an early and important symptom in both males and females with Fabry disease (FD). Fabry-related pain is typically in the feet and hands, but some people experience it in other areas, such as the arms, legs, joints, teeth, or abdomen. People with FD can also experience episodes of profound pain, often referred to as a "pain crisis". These can be triggered by stress, extreme temperatures, exercise, or fever. Overall, most children and adults with FD report improvement of pain after months of treatment with enzyme replacement therapy. However, additional medications may be needed to manage pain. Advanced pain management is often paired with counseling. Pain and depression are closely linked, and treating both together with therapy and/or medication is ideal. Speak with your Fabry specialist about strategies to manage chronic pain, and make a plan of what to do in the event of a pain crisis. Medication management guidelines for FD have been published; see references. References: Wallace 2025 (pmc.ncbi.nlm.nih.gov/article…) , Politei 2016 (pmc.ncbi.nlm.nih.gov/article…) , Hopkin 2016 (drive.google.com/.../1xNOY1Q…) Thank you for participating in Fabry Disease Awareness Month, The NFDF Team Contact the NFDF by email at info@fabrydisease.org or by phone at 800-651-9131. #Fabry #FabryDisease #fabrydiseaseawareness #FabryAwareness #influenceyourfabryoutcomes #nationalfabrydiseasefoundation #FabryDiseaseAwarenessMonth

As we continue to celebrate Fabry Disease Awareness Month, we're sharing expert tips on how to live better and longer lives with Fabry disease. We are fortunate to have FDA-approved treatments for Fabry Disease. They are called Fabry-specific treatments to avoid confusion and distinguish them from other supplemental medicines/therapies that people with Fabry take for various related conditions. Recommendation #14 Consider Fabry treatment There are three FDA-approved treatments for Fabry disease available in the United States: two enzyme replacement therapies (Fabrazyme and Elfabrio) and one oral chaperone therapy (Galafold) for those with amenable variants. "Patients reporting Fabry-related symptoms should consider treatment, regardless of age or sex. This includes patients with mild symptoms, as any symptoms reflect underlying disease progression." Hopkin 2016 "It has become increasingly clear that comprehensive and timely treatment of adult patients with Fabry disease should be directed toward prevention of (further) progression to irreversible tissue damage and organ failure." Ortiz 2018 FDA-approved treatments are known to benefit kidney and heart health, especially if started prior to organ damage. Treatments also improve GI symptoms, pain, and quality of life measures. However, every person responds differently. "Living a healthy lifestyle and taking appropriate supplemental medications can be beneficial. Nothing is more important than receiving a Fabry-specific treatment at the right time, with your physician's guidance." - Jerry Walter Choosing whether or how to proceed with a Fabry-specific treatment is a private medical decision between a person with Fabry disease and their healthcare team. References: Ortiz 2018 (sciencedirect.com/science/ar…) , Hopkin 2016 ( drive.google.com/file/d/1xNO…), fabrydiseasenews.com/ , Mignani 2024 (pmc.ncbi.nlm.nih.gov/article…) Thank you for participating in Fabry Disease Awareness Month, The NFDF Team Contact the NFDF by email at info@fabrydisease.org or by phone at 800-651-9131. #Fabry #FabryDisease #fabrydiseaseawareness #FabryAwareness #influenceyourfabryoutcomes #nationalfabrydiseasefoundation #FabryDiseaseAwarenessMonth

I got scared bro HM nfdf

As we continue to celebrate Fabry Disease Awareness Month, we're sharing expert tips on how to live better and longer lives with Fabry disease. The National Fabry Disease Foundation is proud to support the mental health of the Fabry disease community! We have static resources you can view anytime, including the Mental Health Resources Handout and recorded presentations about mental health and Fabry. The NFDF also partners with KGA and the Canadian Fabry Association to provide a comprehensive, no-cost Family Assistance Program that is available to you and your family members 24/7. Recommendation #13 Seek care for mental health Depression, anxiety, executive functioning difficulties, and other mental health concerns are common in Fabry disease (FD). As many as 60% of individuals with FD report depression across multiple studies. Parents and caregivers should be on the lookout for early signs of depression or problems at school. Consider a referral to a mental health specialist for support. Treatment for depression might include self-help practices, exercise, one-on-one talk therapy, support groups, and/or medication management. The NFDF's cost-free Family Assistance Program includes free mental health support, including a 24/7 crisis line, individual and group counseling sessions, an online resource library, and more. To learn more and sign up, visit my.kgalifeservices.com/ and use "fabry" as your company code. References: Mroczek 2022 (pmc.ncbi.nlm.nih.gov/article…) , Hopkin 2016 (drive.google.com/.../1xNOY1Q…) Thank you for participating in Fabry Disease Awareness Month, The NFDF Team Contact the NFDF by email at info@fabrydisease.org or by phone at 800-651-9131. #Fabry #FabryDisease #fabrydiseaseawareness #FabryAwareness #influenceyourfabryoutcomes #nationalfabrydiseasefoundation #FabryDiseaseAwarenessMonth

As we continue to celebrate Fabry Disease Awareness Month, we're sharing expert tips on how to live better and longer lives with Fabry disease. Today's recommendation is to manage your GI symptoms. The NFDF has three recorded presentations about GI symptoms in Fabry disease, and its management available on our YouTube Channel: youtube.com/playlist?list=PL… On June 6th, we'll be joined once again by Dr. Claire Zar-Kessler for an educational webinar on updates to research on GI problems in Fabry disease. Register now: us02web.zoom.us/meeting/regi… Recommendation #12 Manage your GI symptoms More than half of adults with Fabry disease report GI symptoms, which can include abdominal pain, bloating, nausea, constipation, and diarrhea. GI symptoms can appear in early childhood, with the first symptom often being bloating. As children with Fabry disease get older, they can develop chronic diarrhea and/or constipation. Treatment with Enzyme Replacement Therapy (ERT) for Fabry disease has been shown to reduce GI symptoms after 1-2 years, but some people still have symptoms. Working with a GI specialist, called a Gastroenterologist, can be helpful to identify the underlying cause of GI symptoms and their potential treatment. References: Zar-Kessler 2016 (pmc.ncbi.nlm.nih.gov/article…), Laney 2024 (pmc.ncbi.nlm.nih.gov/article…) Thank you for participating in Fabry Disease Awareness Month, The NFDF Team Contact the NFDF by email at info@fabrydisease.org or by phone at 800-651-9131. #Fabry #FabryDisease #fabrydiseaseawareness #FabryAwareness #influenceyourfabryoutcomes #nationalfabrydiseasefoundation #FabryDiseaseAwarenessMonth

As we continue to celebrate Fabry Disease Awareness Month, we're sharing expert tips on how to live better and longer lives with Fabry disease. Fabry disease is complex, and sometimes, so are the topics we need to discuss at a once-a-year visit to your specialist. Get the most out of your visit by planning ahead. Recommendation #11 Prepare for your annual visit Prepare for your annual evaluations by asking, "what do I want to get out of this appointment"? You might be looking for information about a new symptom or treatment, need a referral or prescription renewal, or confirmation that you're on track. Write down your questions and main concerns to check off as you address them during the appointment. Remember to take your notes with you to the appointment! Take time to consider how Fabry disease affects your day-to-day life and share it with your doctor. It's easy to say you're feeling "about the same as last year", but if you can provide specific details they can be tracked over time. For example, I missed and/or modified X number of activities in the past month, whether it be school, gym class, choir practice, or a family outing. All of these quality of life measures are important to share with your healthcare team! It can be difficult to remember everything that happens in your appointment. Consider asking someone to come with you to take notes or ask permission to record the appointment. Today’s tips are from Casey McKenna, MS, CGC, the NFDF’s Senior Program Manager. Thank you for participating in Fabry Disease Awareness Month, The NFDF Team Contact the NFDF by email at info@fabrydisease.org or by phone at 800-651-9131. #Fabry #FabryDisease #fabrydiseaseawareness #FabryAwareness #influenceyourfabryoutcomes #nationalfabrydiseasefoundation #FabryDiseaseAwarenessMonth