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Help Rare Disease Advocates Share Their Stories

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We are raising funds to publish an empowering book of stories written by people in the rare disease community. Positively Rare will feature twenty-five first-person stories from people who have spent years upon years searching for a diagnosis, who have experienced medical gaslighting, and who live with medical PTSD. Stories about people who have discovered a passion for art, changed careers, and had families post-diagnosis. Stories from parents, caregivers, scientists, genetic counsellors, rare disease advocates, and more.

THIS BOOK WILL CHANGE PEOPLE’S LIVES by amplifying the collective voice of the rare disease community and helping eliminate the fear and stigma of living with a rare disease.

It will be filled with stories told from a wide range of perspectives, by people like:

• Jenny, a rare disease advocate who lives with medical PTSD and is learning to forgive herself and others for what she went through. She is living with familial adenomatous polyposis and short bowel syndrome.

• Tessa, an artist and writer who has had several near-death experiences including when she was travelling in South Korea for a family wedding. She has had multiple surgeries and lives with 22Q11.2 deletion syndrome.

• Plus twenty-three other inspiring stories.

Yes! We are going to share the hardships we have been through. It is important for us to be able to share our struggles and connect with each other through those experiences, but it is more than just that. For the rare disease warriors in this book, their diagnosis was a pivotal moment that led to something else.

Whether that was embracing their new reality, becoming an advocate, enacting social change, or being the guiding light for others who are going through the same thing.

These rare disease warriors teach us that WE ARE SO MUCH MORE THAN OUR RARE DISEASE.

Twenty-five brave people will publicly share their lives with us. By making a donation, you are giving them the experience of a lifetime. They will learn how to share their stories with impact to create awareness and meaningful change in the rare disease community. These are skills they can take forward with them and use in the future as they continue to spread awareness for rare diseases.

We asked our writers: Why do you want to be a part of this book?

Jenny: “As difficult as it has been, I’ve found purpose and passion because of my rare diseases. My ultimate aim is to help others not have the same medical and mental health experiences I did growing up with rare diseases.”

Tessa: “I am participating in the book to raise awareness for 22Q11.2 deletion syndrome and the powerful impact creating art has on my well-being.”

The impact of this book is limitless. It will empower the rare disease community by:
• Improving patient health by empowering people to seek appropriate supports and medical care
• Fostering meaningful conversations within their community
• Acting as a resource for medical professionals so they can better understand the impacts a disease has on patients and their families
• Helping people control the narrative of their experiences and contribute to their community in a meaningful way

A Note from the Lead Author and Project Coordinator

Hi, my name is Erin. I was diagnosed as gene positive for Huntington’s disease in my early thirties. I understand the secrecy and fear that can come with a rare disease diagnosis. I kept my gene status hidden for a very long time. I don’t think we should live our lives that way. That is why I am committed to helping people share their rare disease stories, in their own words. I have seen the positive effect this can have on an individual’s life and their community.

Erin Paterson is a published author, public speaker, and HD advocate. Find out more about her at https://www.erinpaterson.com/bio.

Find out more about the book here:

Funds Raised Will Be Used for . . .

Specialized Writer Coaching Program
• All writers will be coached through the writing process, with one-on-one calls and emails as well as story development coaching.

Professional Services
• Editing and proofreading
• Cover design and book interior design
• E-book formatting
• Book marketing text for online sales
• Book copyright

Online Distribution
• The book will be distributed globally.
• A portion of book sales will be donated to a rare disease–related charity.

Marketing Support
• Custom social media graphics
• Marketing book video
• Marketing guidebook
• Social media training

Positively Rare will be a high-quality book you will be proud to support.

About the Publisher

Lemonade Press is more than just a publishing company. We create empowering books that change the world!

We work with underrepresented medical and rare disease communities. We coach people through the storytelling process and help them create captivating personal stories that will create a ripple effect of advocacy, support, and deep understanding.

#PositivelyRareBook

Find us on instagram @lemonadepressbooks and @erinpaterson_allgoodthings

Thank you for your meaningful contribution. And for helping us create a positive impact on the rare disease community.

Donate

Donations 

  • Jennifer Powell
    • $100 
    • 11 d
  • Mei Caravas
    • $50 
    • 15 d
  • Ann-Sophie Harwardt
    • $25 
    • 1 mo
  • Micki Anderson
    • $200 
    • 1 mo
  • Susan Rzucidlo
    • $50 
    • 2 mos
Donate

Fundraising team (22)

Erin Paterson
Organizer
North York, ON
Laura Will
Team member
Jenny Jones
Team member
Jen Cueva
Team member
Kerri Mauer
Team member

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