ADVOCACY SERVICES WE OFFER OUR R.A.R.E. COMMUNITY
We developed our organization with the entire rare disease community in mind. We advocate to educate and spread awareness about rare diseases. It is our mission to humanize and normalize rare diseases by encouraging patients and caregivers to share their stories and life experiences with rare diseases. We believe patient experience is the key to making advances in rare diseases. We cater to the entire rare disease community and designed our organization centered around the rare disease community.
We are a one stop shop for:
A- Advocacy & Awareness
E- Empowerment, Empathy & Equality
We have unconditional support, confidence boosting activities for rare disease warriors of all ages and their caregivers and a team of advocates on stand by waiting to help connect you to proper resources and information as well as advice based off of their personal experiences. Our advocates are here to empower others to be proactive about their health and is not meant to replace medical care. R.A.R.E. gives rare disease warriors a safe platform to find their voice and connect with other rare disease warriors from around the world.
We know how isolating having a rare disease can be. There is no better feeling than feeling like you belong, around people who understand what you are going through and who support you every step of the way. Thanks to social media, we are able to connect our R.A.R.E. warriors all over the globe in ways we never could before. Our R.A.R.E. Facebook Support Group is a, all inclusive safe space for anyone who is affected by a rare disease, whether they are a caregiver or the patient. We make sure our group members feel safe to share what ever they feel like sharing; we encourage our members to participate in video chats and live streaming to connect with each other on a deeper level. We also provide a safe platform for children with rare diseases to connect with other rare children from around the world through our Penny Pen Pal Program. By becoming a Penny Pen Pal, children can safely learn how to create their own videos or vlogs and share them with other Penny Pen Pals. We encourage our R.A.R.E. community members to support one another and share what helps them and give advice, but please keep in mind all of our members and advocates are rare disease patients and their advice is meant to point you in the right direction for what you may need, it is not to replace the advice of medical professionals.
ADVOCATE TO EDUCATE AND SPREAD AWARENESS
Awareness opens the door--with awareness comes research, and with research comes possible treatments and a better quality of life. It is our duty as rare and invisible disease advocates and warriors to educate the world about our conditions in hopes of spreading awareness, research, support, and hope. We use social media as our tool to spread as much awareness about the conditions that affect our community. We find the latest information on rare and invisible diseases and share it with our community. We also encourage all rare, chronic, and invisible illness warriors to share their stories to show the many different ways rare diseases and other invisible conditions can impact various lives. By sharing your story with a rare disease, you are spreading awareness for your rare disease while at the same time giving other's permission to share their stories as well. The more rare and invisible illness warriors share their stories, the more we will know about how a certain rare disease or diagnosis could affect someone. We contact researchers to find out information and confirm facts and our R.A.R.E. Advocates all have a wealth of knowledge about various conditions and diagnoses; if you want to add your knowledge about your conditions, click here to become a R.A.R.E. Advocate!
SPREADING THE WORD AND OTHER CONSULTING SERVICES
We offer our R.A.R.E. Consulting Services to members of the rare disease community, and one of these services is called "Spread the Word Service". The Spread the Word Service is for anyone with a rare disease who has a personal event, fundraiser, or transplant need. Our team has over a decade of compiled experience in the media, news, professional writing and editing as well as marketing and networking. We use these skills to help our community members by listening to their story and compiling it into a media ready pitch, editing any already existing go fund me accounts if applicable and sending it to media outlets. If the story ends up on air, we then will send the link to organizations we think could help. We hope by doing so we are able to get our client's story on the news and to someone who can help them; we are not directly affiliated to any fundraiser and there are certain rules members must adhere by to continue to receive this service. Other services we provide include graphic and web designing, social media marketing, and pitch writing. You can find out more information on all the services we provide on our R.A.R.E. Consulting Services page!
Positive distractions and healthy coping mechanisms help shift one's attention away from their pain and suffering and onto something else. We encourage our community members to use art, design, and videography as a healthy coping mechanism so they can not only distract themselves, but also have a product that they made and can feel proud of. We offer young R.A.R.E. warriors several creative distractions to take part of, which include our monthly #CreationChallenge and our Penny Pen Pals Program. Through the Penny Pen Pals Program, we hope to teach children how to find their voice through videography and see what vlogging is all about by making videos to share with other young R.A.R.E. warriors in the program. We also showcase any work of art that our young warriors are proud of on R.A.R.E. `Creations. For the R.A.R.E. Warriors 18 and up, we provide multiple ways for our warriors to express themselves through writing, videos, and art. We encourage any rare warrior to submit any writing they made to our R.A.R.E. Voices Blog, any video they'd like to share on The R.A.R.E. Channel, any pictures they'd like to share on R.A.R.E. Life and any artwork they'd like to show on R.A.R.E. Showcase. We want to give our community every way to have their voice heard and showcase their art; contact us today to learn more about sharing your story through R.A.R.E.
RESOURCES AND INFORMATION
R.A.R.E. is a patient-led rare disease advocacy and consulting organization that seeks to give rare disease warriors a better quality of life by providing them with the most up to date research, information, and resources. We take it upon ourselves to find out all we can about our rare conditions and spread that information to the rest of the rare disease community. Our team is constantly reaching out to medical researchers in hopes of learning more information that will help rare disease patients understand how their disease affects their bodies. We also provide the rare disease community with resources to help explain their rare disease to doctors and schools as well as other resources to help track their health. If you would like to request our advocates to make phamplets or imformation graphics about a rare disease you are affected by, please contact the R.A.R.E. Team and let them know!
INSPIRING RARE WARRIORS TO BE ADVOCATES
Advocacy has the power to change the world and it is important for rare disease patients to advocate for their rare disease in order to confront the ableism and ignorance they might experience later in life. We believe advocacy brings the patient's stories to the forefront which sparks the path to solution and advancements in medical research. By becoming an advocate, you not only use your voice to spread awareness for your rare disease but also to shine a light for others who have your rare disease to see. We offer anyone who wants to become an advocate to become a R.A.R.E. Advocate. By becoming a R.A.R.E. Advocate, you are joining an international registry of rare disease advocates that must be active in spreading support and awareness through the community but can choose to be a public speaker for media and speaking inquiries in their area. We also offer consulting services to any rare disease advocate looking to grow their social media pages; if you are interested, you can find out more by checking out our R.A.R.E. Consulting Services