September is Desmoid Tumor Awareness Month. The awareness month campaign was founded in 2016 by a woman named Angela who decided to use her experience with desmoid tumors to start a Facebook page to share people’s stories. Since then, Desmoid Tumor Awareness Month has grown into a worldwide event.

Desmoid Tumor Awareness Month is the perfect time to learn more about this rare disease and raise awareness in your local community and beyond.

If you want to get involved but aren’t sure where to start, this list can give you some ideas for bringing desmoid tumor research and advocacy into focus.

🗳️ Have you participated in a desmoid tumor awareness event or fundraiser?

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Desmoid tumors are very rare: Only 2 to 4 out of every 1 million people worldwide are found to have a desmoid tumor every year. As a result, most people don’t know about desmoid tumors unless it affects them or someone they know directly.

If you or someone close to you is dealing with a desmoid tumor, you’ll probably want more information about things like risk factors, treatment options, and recurrence rates.

Fortunately, there is a lot of information available for those who want to expand their knowledge of desmoid tumors. Take some time this September to learn about the latest advancements for people with desmoid tumors.

In addition to MyDesmoidTumor team, Desmoid Tumor Research Foundation is a great place to learn more.

Once you brush up on your desmoid tumor knowledge, you can use social media to post about desmoid tumors and share information with others. Doing so can help others understand the condition and may even improve their chances of getting a correct diagnosis.

Not sure what to post? You can share content from the Desmoid Tumor Research Foundation, which spends the month of September sharing facts about the condition and stories of people who have or who care for someone with desmoid tumors.

You can simply reshare their stories or tell your own by submitting it to their website.

If you like writing and want to share your experience, you can also send a letter to the editor of your local newspaper. Discuss how desmoid tumors have impacted your life and what awareness month means to you.

Each September, the Desmoid Tumor Research Foundation hosts the Together We Will weekend conference. This event, which takes place in different parts of the United States, features informational workshops, fun activities, and networking opportunities.

Attending the conference and hearing from experts is a great way to get inspired by the strides being made in desmoid tumor research.

If you’re not up for traveling, you can look into any local events that might be of interest.

The Desmoid Tumor Research Foundation sells T-shirts, sweatshirts, hats, and tote bags. You can also make your own desmoid tumor merchandise with iron on letters or through websites that allow you to print custom designs.

Wearing a desmoid tumor hat or shirt may prompt people to ask about them, which can give you an opportunity to share your story.

You can participate in an existing fundraiser or you can set up your own. You can raise money to supply resources, help with desmoid tumor medical bills, or support research.

Some ideas for effective online or in-person fundraisers include:

• Hosting a themed gala — Create a buzz by organizing a fun party where guests purchase tickets to attend and buy raffle tickets.
• Running a charity auction — Ask local vendors to donate items like dinner packages, spa gifts, or housecleaning services, and auction them off at a local event space.
• Setting up a crowdfunding campaign — Use an online platform to share compelling stories, spread awareness, and collect donations.

You can also arrange matching programs for your fundraising events to maximize the money raised. Both large corporations and small businesses may be willing to match a percentage of your profits.

Reach out to different businesses by sending letters and emails or making phone calls to see if they are interested in supporting this good cause.

Since desmoid tumors are so rare, you may not find people nearby who are facing a similar situation. However, there are strong online networks that help connect people with desmoid tumors with others all around the world.

Studies show that people with rare diseases benefit from connecting with others online. Online communities can offer valuable information and support. They also help promote better mental and physical health.

While your healthcare team should always be your primary source of medical information, getting involved with desmoid tumor networks online can be a beneficial step to take this September.