Become a Champion for Our Rare Disease Community

General
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Thank you for being an essential part of our Ben’s Friends community. Today, I want to invite you to take your support a step further by becoming a fundraiser for our “Friends Helping Friends” campaign.

What does it mean to be a fundraiser?

As a fundraiser, you create your own personal fundraising page and share it with your network. It’s a powerful way to amplify our message and reach more people who may want to support our rare disease communities.

The Impact of Sharing Your Story

Your personal experience with rare disease is unique and powerful. By sharing your story as a fundraiser, you can:

  • Help others understand the challenges of living with a rare disease
  • Raise awareness about the importance of support communities (like Ben’s Friends)
  • Inspire others to contribute to a cause that has directly impacted your life

Setting Up Your Fundraising Page is Easy:

  1. Visit our campaign page
  2. Click “Become a Fundraiser” and Register
  3. Set a fundraising goal (we suggest starting with $500)
  4. Add your personal story and a photo
  5. Share your page with friends and family

To help make your fundraising easy, we have also provided several resources like sample emails, sample social media posts, and tips for becoming a better fundraiser.

You can check this all out on our Friends Helping Friends page.

Remember, your efforts make a real difference. Every dollar raised helps us:

  • Maintain and grow our 40+ online communities for rare diseases
  • Launch new communities for underserved conditions
  • Provide vital information and emotional support to thousands of patients and families

If you need any help setting up your fundraising page or have questions, please check out our Fundraising Toolkit or reach out by replying right here.

We’re here to support you every step of the way.
Together, we can make a real difference for those affected by rare diseases!

Thank you for considering this opportunity to make an even bigger impact in our rare disease community.

Warm regards,

Ben’s Friends Team

P.S. Don’t forget to check out our Fundraiser Toolkit for more tips and resources to help you succeed!

@trust_level_0

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What have funds been used for. Please provide details.

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Hi @Critterina

All of our funds go towards making communities like Mast Cell offer patient-to-patient support.

Through the last year, we have been able to operate over 37 different patient communities like Mast Cell and yet be a very cost-efficient non profit. We do this through most of the work that we do being through volunteers like @donsnyder in each of our communities. As well as making sure that no patient goes unanswered, I know Don spends an amount of time researching information about Mast Cell diseases and trying to bring that information to this community.

Our annual operating budget is under $100,000 yet we can make a big impact on the lives of people across the globe. In fact, we’ve been recognized by Harvard Business Review for making a Big Impact on a Small Budget, so rest assured that few non-profit organizations are as efficient as we are.

All non-profits are required to publish their IRS form 990, so if you’re interested to see more detail, it’s available for everyone to see.

We do wholly rely on gifts and donations, so if you’re able to help us with our mission to support rare disease patients across the globe, please do. With our Friends Helping Friends campaign, you can create a fundraising page that you can share with your friends or family or on social media, so even if you’re not in a position to help us directly you may have people around you who would love to support a cause that is here to help you.

Best regards,

Richard
Volunteer Patient Experience Officer