At Rise & Rally, we believe in the power of stories. Your experiences, challenges, and triumphs can help others feel seen, heard, understood, and less alone. By sharing your story, you contribute to a collective narrative that has the power to change the way the system works, raise awareness about specific conditions, and ultimately lead to meaningful change.
Whether you’re living with a chronic, complex, or rare condition, caring for a loved one, or working in the medical field with patients with these types of conditions, your story and experiences matter. Our “Share Your Story” page is a space for you to express yourself, share your experiences, and connect with others who understand what you’ve gone and/or are still going through!
Once you’ve shared your story with us, we’ll do our part to amplify it on our platforms. Whether it’s through our website, social media channels, or community events, we’re committed to sharing your voice and ensuring that your story is heard. Together, we can raise awareness, foster empathy, and drive positive change for those affected by chronic, complex, and rare conditions. So don’t hesitate – share your story today and join us in making a difference!
WAYS TO SHARE YOUR STORY WITH US
common questions
Who Can Share Their Story?
Anyone with a personal connection to chronic, complex, and rare diseases can share their story.
This includes patients, caregivers, family members, advocates, medical professionals, and anyone involved in the rare disease community
Can I Submit My Story Anonymously?
While we prefer to include first names and generalized locations to personalize stories, we understand the need for privacy.
If you wish to remain anonymous, please let us know in your submission, and we will respect your preference.
What If I Need Help Filling Out The Form?
If you need assistance or accommodations with the form or have any questions about the submission process, please contact our team at info@riseandrally.org so we can help!
How Long Should My Story Be?
There is no strict word limit for your story. We encourage you to share as much detail as you are comfortable with. However, concise and clear stories are often more impactful.
Can I Update My Story After It’s Been Submitted?
Yes, if you need to update or make changes to your story after submission, please reach out to us at info@riseandrally.org and we will do our best to accommodate updates.
How Will My Story Be Used?
Your story may be shared with members of Congress, used in our advocacy efforts, or featured in our publications, presentations, website, and social media. We will only use your first name, last initial, city, and state to protect your privacy.
What If I Want My Story Removed After It’s Been Published?
If you decide you no longer want your story published, please contact us at info@riseandrally.org and we will promptly remove it from our platforms.
Will Sharing My Story Have Any Impact On My Medical Care?
Sharing your story is a voluntary and separate activity from your medical care. It will not impact the medical treatment you receive or your relationship with your healthcare providers.
Can I Name My Doctor In My Story?
We ask that you do not name specific doctors or medical professionals in your story. To maintain privacy and confidentiality, please avoid mentioning names of individual healthcare providers. Instead, you can refer to them by their role or specialty. This helps us protect the privacy of all parties involved and ensures that the focus remains on your personal experiences and insights. If you have any questions or concerns about this, please feel free to contact our team for guidance.
Can I Submit My Story If I Am Not Based In The United States?
Yes, we welcome stories from individuals all over the world. While our organization is based in the United States, the challenges and experiences of living with chronic, complex, and rare diseases are universal. Sharing your story can help raise global awareness and contribute to our advocacy efforts regardless of your location. Please include relevant details about your country and healthcare system in your submission to provide context for your experience.
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SUBMIT YOUR STORY
By sharing your personal journey with chronic, complex, and rare diseases (or the experience of a loved one, your experience as a caregiver, provider or friend) you can help others feel seen, heard, understood, and less alone. Your story has the power to raise awareness about specific conditions, highlight the challenges within the healthcare system, and inspire change! Please pick which option you are looking for and fill out the correct form below to submit your story and join us in our mission to advocate for and support those affected by chronic, complex, and rare diseases!
SHARE YOUR STORY in WRITING
SHARE YOUR STORY VIA VIDEO
READ OTHER PEOPLE'S STORIES
Whether you’ve already shared your own story, are seeking inspiration for writing yours, or simply want to connect with others in our community, reading the stories of those who have walked similar paths can be incredibly meaningful. These stories offer valuable insights into the challenges and triumphs of living with chronic, complex, and rare conditions. By reading them, you may find solidarity, gain perspective, and discover new ways to navigate your own journey and even more motivation to advocate for change and work towards a more supportive and inclusive healthcare system.
Sharing and reading these personal narratives helps to build a sense of community and understanding among those affected by these conditions. It highlights the resilience and strength of individuals who face these challenges daily and emphasizes the importance of collective advocacy. Through these stories, you can see firsthand the diverse ways people manage their health, advocate for themselves, and find joy amidst their struggles.
These stories also serve as a reminder that you are not alone in your experiences. They foster a sense of belonging and mutual support, creating a network of individuals who understand and validate each other’s struggles and victories. Engaging with these stories also contributes to raising awareness and educating the broader public about the realities of living with chronic, complex, and rare conditions. By sharing our experiences, we can challenge misconceptions, reduce stigma, and advocate for necessary changes in the healthcare system. Click below to start reading some of those stories that will hopefully encourage you as much as they do us.
