International Pemphigus Pemphigoid Foundation的动态

As you probably know, black communities often face higher rates of blood diseases like sickle cell. But did you know Black donors, especially those with the Ro blood type, are critically needed to ensure the best possible care? Patients with blood disorders often need blood closely matched to their own ethnicity. Black people have a higher frequency of certain blood types critical for treating these conditions, like the Ro blood type. About 55% of black people have a Ro blood type, compared to 2% of the wider population. The Ro blood type is a variation of Rh positive blood, more common in Black individuals. For many Black patients with sickle cell disease, who often have the Ro blood type themselves, donations from Ro-positive Black donors are ideal for optimal transfusion compatibility, leading to better outcomes and fewer complications for patients with sickle cell disease. By donating blood, especially if you have Ro blood type, you directly help others within the Black community who may need it most. Every donation makes a difference! Join the community on BlackPharma.org #BlackPharma #BlackBloodMatters #DonateBlood #SickleCellAwareness

Today I'm attending the FECCA (Federation of Ethnic Communities' Councils of Australia) conference. It's great to hear from Hon Mark Butler MP and Hon Ged Kearney MP (Minister and Assistant Minister for Health & Aged Care, respectively) talk about addressing important issues related to multicultural health, including improved data collection, health literacy, benefits of community co-design and trusted sources of health information. This is precisely why we started the South Asian Genes and Health in Australia study (SAGHA, saghaus.org). Addressing the health research data bias is essential for greater equity in health and healthcare. The work we do through the SAGHA study is laying the foundations for more inclusive cardiovascular disease research in Australia.

Have you ever thought about giving blood? Did you know that just one hour of your time could save up to 3 lives? NHS Blood and Transplant (NHSBT) is urgently calling for 135,000 new blood donors this year – and they need YOUR help to make a difference. There’s a particular need for Black donors, as approximately 13,000–15,000 people in the UK are living with sickle cell anaemia, the fastest-growing genetic blood disorder. For these patients, regular blood transfusions are a lifeline. Why does ethnicity matter in blood???????? donation? Blood donations from people who share the same ethnic background as the recipient significantly reduce the risk of complications during transfusions. Patients with sickle cell often require Ro subtype blood, which is much more common among people of Black heritage. Yet, only 2% of donors have this vital subtype, while demand is increasing by 10–15% each year. That’s why CAHN is partnering with NHSBT to engage and empower our community to step forward and save lives. Did you know? A regularly transfused sickle cell patient may need the support of 100 donors a year to stay alive. Could you be one of those 100? To find out more or to register as a blood donor, visit blood.co.uk or call 0300 123 23 23. Give Blood TODAY! Together, let’s make a life-changing impact. ?? #GiveBlood #SickleCellAwareness #LifeSavingDonation

There is currently no cure for cystic fibrosis and too many people with CF die young. I'm walking to help change that reality. CF is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure. Every person born with cystic fibrosis is on a unique journey and experiences this challenging disease differently. While progress has been made, a long road lies ahead for far too many people fighting this terrible disease. We need a cure so that everyone with CF has a better chance to live a long, healthy life. Will you help us end cystic fibrosis? By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward - a cure for everyone with CF. #https://lnkd.in/emzdUFRd

Amyotrophic Lateral Sclerosis (also known as ALS or Lou Gehrig’s disease) is a very devastating disease. ALS progressively paralyzes people because the brain is no longer able to communicate with the body. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe. For more information about ALS, donation links, and ways to receive support, visit www.ALS.ca #als #alsawareness #alsawarenessmonth #lougehrig

October is #BreastCancerAwarenessMonth, a time to shine a light on this disease affecting millions worldwide. Let's empower ourselves and others by: 1. Knowing the signs: Be aware of changes in your breasts, like lumps, pain, or nipple discharge. 2. Getting regular screenings: Mammograms are crucial for early detection. 3. Supporting research: Donate to organizations working towards a cure. 4. Sharing your story: Your experience can inspire and uplift others. Together, we can make a difference. #CancerTreatment #Empowerment #HealthEducation #EarlyDetectionSavesLives #DrAaronWilliams #HealthyLifestyle #RaiseAwareness #CancerPrevention #WeeklyWellnessShow #BreastCancer

I am participating in the Slide It Forward:?Slide Strides for ALS Challenge?and I would love for you to join me! ? Our goal is to stride (walk / run / hike) a collective 5,000 miles during the month of May, ALS Awareness Month, in honor of those who have been impacted by the disease. For every mile logged, Slide will donate $5 to ALS Association & ALS TDI. Any miles you log will contribute to reaching our goal. To join me in the?Slide Strides for ALS Challenge, complete this form:?https://wkf.ms/3QmxMiT ? Why 5,000 miles? According to the CDC, over 5,000 Americans are diagnosed with Amyotrophic Lateral Sclerosis (ALS) each year. ALS, also known as Lou Gehrig's disease, is a progressive disease in which?the person with ALS slowly loses muscle control, including their ability to walk, talk, swallow, and eventually breathe. Our participation in ALS Awareness Month will bring resources to find treatments, a cure, and ways to empower people affected by ALS to live their lives to the fullest. ? #ALSAwarenessMonth #SlideitForward #SlideStridesChallenge

I need everyone's help. My granddaughter has severe NKH. We are getting oh so close to trial meds to help her, but need funding. Once the medication is ready, we have to spend several weeks at the Colorado Children's Hospital for treatment & see how it's tolerated. Please, please help us, and help save my granddaughter and many other kids just like her. Click the link and donate or if you can't, please share. https://gofund.me/79cda309 ?? What is NKH ? ? Non-Ketotic Hyperglycinemia ?? FACTS ?? - There are less than 500 known cases in the WORLD. - There are different forms; mild, attenuated, and severe. - Most commonly, children are severely affected. - It is a genetic disease that currently has NO CURE. - NKH causes severe developmental delay, seizures, hypotonia & other issues. - Strange thing to look for if you feel your newborn may be affected: HICCUPS! Sounds crazy, but it's true. - The only funding for the small amount of research that there is, comes through the NKH families. - These children are fighters. - The NKH network of families will NEVER give up on fighting for a cure. We are one. Alone we are rare, but together we are strong. We will do our BEST to spread awareness about NKH in hopes to one day, find a cure. I challenge YOU to share this post. Teach someone about NKH! ?? #TeamBraylynn #braylynnsbattlewithnkh #nonketotichyperglycinemia #bumblebee #nkh #raredisease

I am participating in the Slide It Forward:?Slide Strides for ALS Challenge?and I would love for you to join me! ? Our goal is to stride (walk / run / hike) a collective 5,000 miles during the month of May, ALS Awareness Month, in honor of those who have been impacted by the disease. For every mile logged, Slide will donate $5 to ALS Association & ALS TDI. Any miles you log will contribute to reaching our goal. To join me in the?Slide Strides for ALS Challenge, complete this form:?https://wkf.ms/3QmxMiT ? Why 5,000 miles? According to the CDC, over 5,000 Americans are diagnosed with Amyotrophic Lateral Sclerosis (ALS) each year. ALS, also known as Lou Gehrig's disease, is a progressive disease in which?the person with ALS slowly loses muscle control, including their ability to walk, talk, swallow, and eventually breathe. Our participation in ALS Awareness Month will bring resources to find treatments, a cure, and ways to empower people affected by ALS to live their lives to the fullest. ? #ALSAwarenessMonth #SlideitForward #SlideStridesChallenge

Sepsis; known as a "silent killer" kills more people in the UK than breast, bowel, & prostate cancer combined. Our Dad died of sepsis ten days after celebrating his 90th birthday, as regrettably, the Hospital failed to investigate sepsis, which culminated in Dad passing two days after he was admitted. The Medical Examiner, could not issue the death certificate, as there were conflicting views from doctors, on his cause of death, so it was referred to the Coroner’s office, with a post mortem instigated. Ten months later we attended the full day Inquest, that determined that Dad did indeed die of sepsis. After the Inquest, the coroner issued a Regulation 28 Report – R28 to the Hospital Trust, which identified the failure to commence a diagnostic pathway to investigate sepsis. The Chief Executive of the Hospital replied to the R28, this time last year, detailing a number of improvements, to ensure sepsis screening in the Emergency Departments was improved.?We asked the Chief Executive if the report could be enhanced by adding the current sepsis policy. Unfortunately we did not receive a reply of condolence, we were passed directly to the Trusts legal department. We now have an ongoing claim & have clarified to the Trust lawyers that any monies obtained, will be donated to the UK Sepsis Trust, to support their mission to improve sepsis outcomes, by educating healthcare professionals & empowering the public to Just Ask: Could it be Sepsis? Additionally, in Dads memory & to raise awareness of sepsis, in May 2025, my two brothers & me, will be Skydiving from 15,000ft, with all donations going to the UK Sepsis Trust. Anyone that is interested in supporting this excellent charity, with their mission, please click on the picture below, which will open JustGiving. Thank you LinkedIn friends & colleagues for your support.