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- Health
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- United States
- Date change rule:
- Every March
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Alport Syndrome Awareness Month is observed every March to spread the word about this rare genetic disease that primarily affects the kidneys, ears, and eyes. Creating awareness helps garner desperately needed support to fund research and provide treatments. Learn how you can get involved, support research, and share vital information.
Want to sponsor Alport Syndrome Awareness Month? Learn how
Expected Alport Syndrome Awareness Month Deals
As Alport Syndrome Awareness Month unfolds, the focus shifts from commercial deals to crucial fundraising and educational initiatives. Organizations like the Alport Syndrome Foundation (ASF) and the National Kidney Foundation (NKF) lead campaigns, often partnering with corporate sponsors for donation matching programs or awareness drives. Pharmaceutical companies such as Alexion Pharmaceuticals and Sanofi, involved in rare disease research, may highlight their commitment to finding treatments through educational content or research grants. Patient advocacy groups will promote merchandise sales where proceeds directly fund research or patient support services. We encourage direct donations to reputable foundations and participation in virtual or local awareness events throughout March.
Platform Guide for Alport Syndrome Awareness Month
Tag @nationaltoday_ and use #AlportSyndromeAwareness. Share infographics, patient stories, or facts about the genetic condition to educate your followers.
Mention National Today (facebook.com/nationaltoday) and use #AlportSyndromeAwareness. Join or create support groups to share experiences and resources with affected families.
X/Twitter
Mention @NatlToday and use #AlportSyndromeAwareness. Participate in live Q&A sessions with medical experts or share links to the latest research findings.
Alport Syndrome Awareness Month Hero
Dr. A. Cecil Alport
History of Alport Syndrome Awareness Month
Alport Syndrome Awareness Month is celebrated during National Kidney Month in March. During this month, the Alport Syndrome Foundation (A.S.F.) partners with other kidney-related organizations to create awareness of Alport syndrome, an extremely rare genetic disease that causes a decline in kidney function over time.
There is currently no specific treatment for Alport syndrome. However, according to the National Kidney Foundation, doctors may prescribe medications to slow the development of kidney disease. Through their efforts, the A.S.F. hopes to increase early and accurate diagnosis of Alport syndrome and emphasize the need for research and funding. Research is ongoing to understand Alport syndrome better and develop more effective treatments and cures.
In 2021, the A.S.F. presented a funding award of $132,000 to the Division of Nephrology at Washington University to support Dr. Jeffrey Miner’s laboratory as it carries out studies that would effectively treat patients with Alport syndrome. In 2019, patients shared black and white photographs of themselves for the Facing Alport Syndrome campaign organized by the A.S.F. They sent the pictures to medical professionals to provide a visual demonstration of how Alport syndrome affects people of all ages, genders, and backgrounds. Patients also shared the A.S.F.’s social media messages to raise awareness of Alport syndrome on social media.
Alport Syndrome Awareness Month timeline
Dr. Cecil A. Alport first identifies Alport Syndrome in a British family.
Sharon Lagas, the co-founder of the A.S.F., dreams about starting the organization after losing her brother to the disease.
Patients share black and white photographs of themselves to help medical professionals visualize how Alport syndrome affects different people.
The survey reveals that 51% of adults suffering from Alport Syndrome are misdiagnosed or incompletely diagnosed.
How Businesses Can Celebrate Alport Syndrome Awareness Month
Local businesses can play a vital role in Alport Syndrome Awareness Month by hosting educational events or partnering with patient advocacy groups. Consider displaying informational posters about kidney health, offering a portion of sales to an Alport syndrome research fund, or organizing an employee wellness challenge to promote healthy lifestyles. Pharmacies and healthcare providers can offer free screenings or distribute literature on genetic kidney diseases. These efforts help to amplify the message and foster a supportive community.
Alport Syndrome Awareness Month FAQs
When is Alport Syndrome Awareness Month?
In 2027, Alport Syndrome Awareness Month will again be observed throughout March, focusing on advocacy and support for affected individuals and their families.
How many people are affected by Alport Syndrome?
With an estimated prevalence of one in 5,000 to 10,000 individuals worldwide, Alport syndrome impacts a substantial number of families, emphasizing the need for continued awareness and research in 2027.
What are the main symptoms of Alport Syndrome?
Key indicators of Alport syndrome typically involve chronic kidney disease that worsens over time, sensorineural hearing loss, and ocular issues such as lenticonus, all of which warrant early diagnosis and management.
Is there a cure for Alport Syndrome?
As of 2027, Alport syndrome remains a condition without a definitive cure, though ongoing research aims to develop targeted therapies. Current medical approaches are designed to mitigate disease progression and improve quality of life.
How to Observe Alport Syndrome Awareness Month
Create awareness
Join the A.S.F. and the world by creating awareness about Alport syndrome. In recent years, one of the most powerful ways of spreading messages worldwide is through social media. Share Alport syndrome-related content on your Facebook, Instagram, Twitter, or LinkedIn profile to spread the word.
Attend an Alport syndrome webinar
Webinars are a great way to learn about new topics and solutions to various life challenges. Attend the A.S.F.’s annual webinar, or feel free to organize one yourself and invite your friends and family. The goal is to educate as many people as possible about Alport syndrome.
Support fundraising campaigns
There is no better way to show compassion and support to another human being than giving a gift. Every penny you give could end up saving someone’s life. Donations to Alport syndrome campaigns are used to fund sensitization efforts and research to treat Alport syndrome.
5 Important Facts About Alport Syndrome
There is no treatment
Medications are only given at an early stage to treat the symptoms and slow the development of kidney disease.
It is an inherited disease
Parents pass Alport syndrome on to their offspring or descendants.
Different genetic types
There are three types of Alport syndrome: X-linked Alport Syndrome, Autosomal Recessive Alport Syndrome, and Autosomal Dominant Alport Syndrome.
All types affect kidneys
Alport syndrome damages the tiny blood vessels in the kidneys’ glomeruli, preventing the waste and extra fluid in the body from being filtered.
You lose a piece of your kidney
It’s helpful to diagnose Alport syndrome through a kidney biopsy — they use a special needle to extract a piece of your kidney to view it under a microscope.
Why Alport Syndrome Awareness Month is Important
We learn more about Alport syndrome
Alport Syndrome Awareness Month provides the opportunity to educate the world about Alport syndrome, creating the much-needed awareness for early diagnosis that could save someone’s life. People suffering from the disease speak about their life, opening up more discussions on the subject.
Funds are raised for research
Increased awareness often leads to funds, as the A.S.F. showed in 2021 when they presented a $132,000 funding award to Washington University. The foundation donated the money for research to treat Alport syndrome.
Valuable insights are shared
Campaigns like Alport Syndrome Awareness Month allow patients and experts to share valuable insights into Alport syndrome. For example, in 2021, the A.S.F. shared insights from their Diagnosis Stories Survey involving 240 patients, revealing that 51% of adult patients were either initially misdiagnosed or incompletely diagnosed.
Social Media Tips for Alport Syndrome Awareness Month
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