We are looking for Patient Stories of Hope and Inspiration – to be shared with the world every day.

Nothing can portray the fight, the struggles, the daily challenges, the joy, the inspiration and the hope as much a story can.

As we approach the month of February, and the celebration/recognition of World Rare Disease Day 2012, we would like to take this as an opportunity to share our rare stories with the world!

Global Genes and R.A.R.E. Project will be co-promoting a ‘patient story of inspiration and hope’ every day in the month of February 2012 in support of World Rare Disease Day.

Stories should be limited to 3 paragraphs and please provide a photograph for us to include. As a thank you for your participation, we will send you our new “CARE ABOUT RARE” Genes ribbon car sticker!  It is an exciting time and an important time for us to come together as a community!

5 thoughts on “Get a Global Genes Car Sticker – Simply Submit Your Rare Patient Story of Hope and Inspiration”

  1. juano ocampo says:

    My name is Juano Ocampo and I am a 2 time brain cancer survivor I just wanted to share my own experience of my battles with cancer at such a young age, the first time I was diagnosed with cancer I was 18 years old and it came back when I was 19 underwent major surgeries and further biopsy tests as well as intense chemo therapy and radiation, and also stem cell collection and lastly bone marrow transplant. Facing brain tumor twice was no doubt the hardest thing I’ve ever fought in my life but I realized if I just stay strong everyday and always believe that there’s something greater than the trials I’m facing I will win, so I took the pain and held strong with God by my side along with family and friends I felt the true meaning of life and learned how to be strong and live life and believe that nothing is impossible that anything you wanna do in this world you can do it.

  2. I was dx with multiple System Atrophy in August of 09. I am
    fighting this disease every day.It has taken away the life i once had. now i am mostly bedridden, have to have help to get up from sitting or from lying down. have to scoot on my bottom to get down the stairs and crawl up the stairs. sometimes i feel like i am on this journey alone. Many have turn their backs on me since i became aflected with this nigtmare of a disease. Need a stair lift chair but cannot find an orgination to help me obtain one.

  3. Hugh Hempel says:

    Hi Sandra. First, hugs to you – I am so glad you felt comfortable sharing your story with us. Have you seen our recent MSA story published in our Patient Stories of Hope and Inspiration? https://rareproject.org/2012/02/15/paolas-life-with-multiple-system-atrophy-msa/ Your voice is an integral part of raising awareness …. thank you for speaking out about MSA. We are thinking of you.

  4. Hugh Hempel says:

    Sharing your experience is so important to the community – kudos to you for allowing others to see your bravery. Thank you!

  5. Thomas Frandsen says:

    Rare about Care is so nice

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