PSA Remix: Rare Disease Day 2016

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In honor of #RareDiseaseDay, the Pheo Para Project has remixed the PSA we produced and distributed in late 2015 for NET Cancer Day. Like its predecessor, it is intended to serve as a point of focus for those with pheochromocytomas and paragangliomas during this time when similar conditions are in the spotlight.

As we note in the video, roughly one in ten Americans today is currently diagnosed with a rare disease. The chances are very good that each of you reading this knows at least one person with such a diagnosis.

Those with rare diseases struggle with both obtaining that diagnosis, and with finding treatment options. Symptoms of rare diseases make them easy to mistake for other, more common conditions. Once diagnosed, many patients find they have limited treatment options, because research into rare diseases isn’t funded at the same levels as research into diseases currently thought to be more common.

Today, on the rarest of days, we want you to hear the voices of those diagnosed with rare diseases. Please, when you make the choice this year to make a charitable contribution, consider funding research into rare diseases.

Remembering Lori

Our condolences to Erin, Julie, and their family. We are sad to report that pheo has taken another life all too soon. Stories like Lori Kozempel’s emphasize the painful reality of pheochromocytoma; we know too little and we must help patients and medical professionals learn how to diagnose early.

Julie Yankanich, Lori’s daughter, is telling her story and raising awareness with the help of her daughter, Erin. Please take a moment and read about Lori and Julie.

 

#NET #NETcancer #neuroendocrine #incaliance

#netcancerday

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It’s NET* Cancer Day! Read on to learn why today is so important.

Why do we need this day?

Too frequently patients are misdiagnosed when presenting symptoms of NET cancer. Common misdiagnoses are IBS, asthma, diabetes. Patients with pheochromocytoma often have their symptoms attributed to anxiety, menopause, hypertension, and thyroid disorders. The average patient with NET cancer will see six different healthcare professionals, over twelve visits, before they are correctly diagnosed. (INCA)

How does NET Cancer Day help?

Raising awareness about NET cancers helps empower patients and medical professionals. Better information leads to earlier diagnosis, well-informed medical professionals, and overall improved quality of life for people with NET cancer and their families.

NET Cancer Day is a worldwide campaign. Accessible and equal care and treatment for NET cancer patients is a priority of NET Cancer Day. This helps strengthen international and local communities and improves public health all over the world. Working together is the best way to learn and grow. (NET Cancer Day)

Where can I learn more?

To learn more about NET Cancer Day, go to their home page or check out their Twitter account (@netcancerday). For more information about pheochromocytoma and paraganglioma, we recommend starting with Dr. Karel Pacak’s page with the National Institutes of Health (NIH).

Learning is the first step toward making a change! Educate yourself and others with the resources above.

#netcancerday #netcancer #neuroendocrine #incalliance

*NET stands for neuroendocrine tumor.

Today

Today is NET Cancer Day. Throughout social media today, you’ll see lots of zebras, and lots of stories of delayed diagnosis. Unfortunately, regardless of the type, neuroendocrine cancers tend to by asymptomatic, or to cause symptoms which are easily confused for more common health conditions.

To learn more, visit our Resources page for some links to pheo/para- and NET-related sites. If you see a friend posting a zebra image today, take the time to learn his or her story, and re-post to show your support. On Twitter, look for the hashtages #netcancerday or #netcancerawareness.

And remember, visit The Pheo Para Project YouTube Channel to see our collection of videos highlighting the stories of some of our friends who have been diagnosed with pheochromocytomas and/or paragangliomas.

NET Cancer Day

November 10 is NET Cancer Day. Our first project, a brief informational video designed to increase public awareness of pheos, paras, and the symptoms they cause, will be live on our YouTube channel that day. In addition, each participant’s complete individual story will be available for viewing.

Many heartfelt thanks to our brave contributors, who took a big step to help everyone dealing with pheos and paras by telling their stories publicly. This project wouldn’t exist without their participation. If you’d like to contribute going forward, please contact us and let us know. Our email address is pheo para project (no spaces) at gmail dot com.

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