Rare Disease Day 2022

Posted by: 
Rima Manomaitis
I have been an advocate for a rare disease called cystic fibrosis for most of my life. I have been fundraising and raising awareness since I was in a stroller doing walkathons. I won a contest where I designed a nascar when I was 10 years old through a non-profit and was able to share my journey with CF all over the United States. As I grew older, I started to take on the advocate role as I witnessed the demons of a rare disease. It caused me to understand that funding was super important for the entire CF community. When I was 19 years old I started understanding the fatal aspect of CF and started to post my journey on my social media. I used to be super shy about my illness but I decided that I needed to raise awareness and I should never be ashamed of something that I got through. I would rather help others and get the word out. Whenever I meet new people, virtually or in person, most do not know what cystic fibrosis is. Sometimes they know of it, but do not know anything about it. Once I teach others about CF and a look into my life, they start to take interest and ask for ways to help. By sharing my story and being an advocate, I am able to introduce new people into our community and start becoming an advocate for a cure.  


Being an advocate is so important to me. Not only am I able to get the word out about the rare disease that I have lived with my whole life, but it is a coping mechanism for me. I find talking about my experience to raise awareness of cystic fibrosis and having a double lung transplant really helps me deal with my inner feelings and anxieties that I may harbor. Because I talk about this almost on a daily basis, I am able to raise awareness not only for my journey but for many other rare diseases. Being an advocate has helped me meet new people, help others going through trials and tribulations, and keep the world aware of rare diseases that most do not know about. 


Without awareness I believe not one soul would know of any rare disease unless it directly affected that individual or their immediate family. No one would understand what a day in the life of living with it looks like, and how many people are struggling to just survive. We would not see the miraculous drugs entering the pipeline that have helped the quality of life of the individuals. There would be little to no known research and development of drugs because without talking about it and spreading knowledge and stories, there would not be any funding to do so. Essentially, we would live in a world where people would not know of any rare diseases. Knowledge and sharing stories is power in the rare disease community and that is why bringing awareness to rare diseases is so important in order for the individual to survive. 


The impacts that I have seen through my advocacy and awareness of cystic fibrosis and organ transplant have been incredible. I have had many people send me messages or come up to me and tell me that because of my advocacy and sharing my story, it helped them go forward with transplant. Many people have signed up to be an organ donor because of me opening up about my personal experience. The messages bring tears to my eyes when I hear that I was able to impact someone to change their life or someone else.  I have raised money for research and development of drugs. The donations have come a long way with improving the quality of life with cystic fibrosis and post transplant. It’s very rewarding being an advocate and I wouldn’t change it for the world. I hope that advocacy continues to grow so that all of the rare diseases are talked about and we can help with the quality of life of those living with each one. It all starts with talking about it.










Help Others Live STRONGER and LONGER-



Tiffany was diagnosed with cystic fibrosis at birth in 1989. She received a double-lung transplant in November 2016. Since her transplant, she has been active and living life to the fullest with her new lungs. She has been advocating and helping the CF community through her YouTube channel LUNGS4TIFF and personal Instagram account @Tiffrich22. Tiffany loves Taylor Swift, make up, her friends and family, and Disney! 


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