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Blue Faery puts #livercancer patients, families, caregivers, and healthcare providers first in everything we do. 💻 Our online presence advocates for patients, caregivers, and those working in the field of HCC and hepatitis. 📚 Our publications are free and accessible to all who need them. 🗣️ Our live workshops educate the public about HCC, including symptoms, risk factors, and available treatment options. Support Blue Faery's work by donating today 💙 https://lnkd.in/g-yr-zFT #liver #disease #nonprofit

💙 Join Us in the Fight Against Polycystic Kidney Disease (PKD) 💙 I am reaching out to share a deeply personal cause that is close to my heart. My 18-year-old stepdaughter, Chalese, has been bravely battling Polycystic Kidney Disease (PKD), specifically the rare and severe form known as Autosomal Recessive Polycystic Kidney Disease (ARPKD). PKD is a genetic disorder characterized by the growth of numerous cysts in the kidneys, which can lead to kidney failure and other severe health issues. There are two main types of PKD: 1. Autosomal Dominant PKD (ADPKD): Typically diagnosed in adulthood, affecting about 1 in 400 to 1,000 people globally. 2. Autosomal Recessive PKD (ARPKD): This rare form, affecting 1 in 20,000 children, can be detected in the womb or shortly after birth and often leads to severe complications early in life. ARPKD is particularly challenging, with more than half of children affected experiencing kidney failure by age 15 to 20. Despite these daunting challenges, Chalese continues to show incredible strength and resilience. We are committed to raising awareness and support for those affected by this disease. One significant way you can help is by participating in or donating to the Walk for PKD. This event is crucial for funding research and providing support to families affected by PKD. How You Can Help: • Walk with us: Join the Walk for PKD on Sept 21st in Salt Lake City at Sugarhouse Park at 8:30am. Join our team “Chalese’s Hope”. https://lnkd.in/gprprTuJ • Donate: Every contribution, no matter how small, makes a difference in the fight against PKD. Donate to team “Chalese’s Hope”. https://lnkd.in/gprprTuJ Together, we can make a difference. Thank you for your support! #PKD #WalkForPKD #ARPKD #KidneyDiseaseAwareness #Donate #Support #Health

Almost Half of Rare Disease Co-Pay Support Funds Closed or Restricted As a rare disease patient myself, I did not want to rain on the parade of “I Support Rare Disease Day” with this post. But, I looked yesterday at the status of 168 rare disease co-payment assistance funds. 81 one of them were closed or otherwise restricted. This means that those 81 funds were not providing assistance, at the very least, to new patients and, in many cases, ANY patient. That was true for 48.2% of the rare disease funds—basically half. But what I find scary about this is that this is the situation as of February 29, still early in the calendar year—and not long after donors have made their annual commitments. So, the very real risk is that we go from bad to worse as the year progresses. OIG, we need a meaningful set of changes to the advisory opinion pathway. Rare disease patients are suffering. It is not right. #charity #oig #rarediseaseday #raredisease #rarediseases #drugprices

‘Fair market value’ is a critical yet confusing issue for charities and industry trying to work together across the UK and Ireland. So charities led by steering group; Cancer52, HRCI - Health Research Charities Ireland, Patient Information Forum (PIF), National Rheumatoid Arthritis Society (NRAS) gathered earlier this week to continue the work on setting new standards and developing guidance. Our next step … a virtual workshop on Fair Market Value on Wednesday 3rd July, please email [email protected] for further info by COP Monday 1st July. #healthcharity #pharmaceuticalindustry #fairmarketvalue #patients

What would you give to prevent brain damage caused by hypoglycemia? This giving season, you can make a SWEET impact on the hyperinsulinism (HI) community by donating to help fund research, care, awareness, and a cure. Visit congenitalhi.org/donate to give to the Sweetest Cause 💜🎁 #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia #sweetestcause | Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

Although infections are the primary cause of morbidity and mortality, the lack of genetic testing facilities makes it difficult to gather information on rare diseases. Still, the burden of such disorders is considered equal if not higher than in high-income countries. # Democratizationofgenetictesting will narrow the gap.

🌍❤️ World Thalassemia Day: Educate, Donate, Save Lives! 💉🧬 On World Thalassemia Day, let's raise awareness about this genetic blood disorder and the impact it has on individuals and families. Thalassemia causes the body to produce fewer healthy red blood cells, leading to anemia and other health challenges. 🔍 Understanding Thalassemia: Thalassemia is an inherited condition that requires lifelong management and treatment. Many individuals with severe thalassemia rely on regular blood transfusions to survive and thrive. 💉 The Power of Blood Donation: Blood donation is crucial for thalassemia patients as it provides them with healthy red blood cells. Your donation can make a life-saving difference and bring hope to those in need. 🤝 How You Can Help: Educate yourself and others about thalassemia, and consider donating blood regularly. Your generosity can ensure a stable blood supply for thalassemia patients and other individuals requiring transfusions. Let's come together to raise awareness, educate communities, and support thalassemia patients through blood donation. Together, we can make a lasting impact and save lives! ❤️💪 #worldthalassemiaday #donatesavelives #BloodDonationMatters #donation #who #ghanahealth #curarecares #healthcare #healthday #worldhealth #worldhealthorganization #innovation #healthcareinnovation #healthsolutions #healthcaresolutions #healthtchoices #electronichealthrecords #ghana #ghanahealth #ghanahealthservice

⏳We have 10 days leading up to Rare Disease Day 2024, celebrated this year on February 29th. 🤲Can you help us raise money to support treatments for MSMDS during these TEN DAYS? https://lnkd.in/eX8ybJkk #RareDiseaseDay celebrates the children and families striving every day of the year to find the strength and courage to live boldly with these diseases and work toward better futures. Your donation helps make this future possible! https://lnkd.in/eX8ybJkk ⬇️Here are some ways YOU can help in the next TEN DAYS! ☎️Share your story with local media: Get in touch with the newspaper, local tv, radio or digital news platforms and let them know about this disease that only affects to one in 131 million people because of an error in the DNA. 🏡Yard sale: Have a look at the clutter you have at home and ask around to friends and family to see if they could find something to sell along with your things. Invite your neighbours too! 🏃♀️🏃Community walk or run event: Gather your neighbour friends or workmates and organise a walk or run event during the 29th of February where people can contribute with donations to participate and have fun. 🤝Partner with a local cafe or restaurant: Speak to the manager of your local cafe and ask if a percentage of proceeds on a given day can be donated to ACTA2 Alliance during the Rare Disease Week. 👚👕Dress down day at school: Speak to the head teacher to propose a dress down day where children can contribute to this cause. 🥳Host a party: Choose a theme and organise a party at home for your friends and family. Charge an entry and ask them to bring food, drinks and decorations, so everyone can contribute in their own way. ‼️And if you can not wait to collaborate, share the link to donate straight away in our PayPal page: https://lnkd.in/eX8ybJkk 🙏Please give generously to this cause! #raredisease #rarediseaseawareness #rarediseaseday2024 #rarediseasemonth #rarediseaseresearch #genetherapy #acta2 #msmds

People who suffer from sickle cell disease need up to 4 pints or units of blood every single month to survive.  Normally, red blood cells are disc-shaped and flexible enough to move easily through the blood vessels. If a person have sickle cell disease, their red blood cells are crescent- or “sickle”-shaped. These cells do not bend or move easily and can block blood flow to the rest of your body.  That is why every month a sickle cell patient needs 4 units of blood, to survive.  Blood can not be manufactured only the potential blood donors are the ray of hope for someone to survive . Kindly make your contribution by donating blood today. Aware your near and dears as well. Give your part, donate blood save lives. #sickle #cell #donate #need #4pints #units #blood #every #month #for proper #functioning #give #your #part #donate #today #save #lives #ngo #ngoindia #ddlbloosdeva #ddlfoundation

It seems like there is a day for everything, and today happens to be #WorldBloodDonorDay. Warning: incoming potential personal overshare, but there are often very blurred or indistinct boundaries between professional and personal values. I have been donating #blood for a few years. It turns out that I have a rare Ro blood type - only 2% of current UK donors have this, and yet apparently demand for is increasing by 10-15% per year. There is a widening demand for donations for this blood type. According to the UK Blood Service: "Ro blood is vital in treating sickle cell; approximately 245 babies a year are born in the UK with this condition. Treatment is often with regular blood transfusions. Each year, a regularly transfused patient with sickle cell will need an average of 100 blood donors to stay alive." Likely I will never know or meet the recipient of my blood donation. I am totally ok with that. Actually I think that makes the service of donating even more amazing: knowing that a small act of sitting in a chair for a few minutes will have given a stranger, and their family hope and opportunity. If you are not yet a donor, do consider becoming one, if you are able to. https://www.blood.co.uk/ https://lnkd.in/ePtcHGjy #savealife