Are you a fired up activist? For many, life with rare disease is a daily fight and in order to get pumped up for the battle they rely on community, support and the creativity of activism. We’ve seen plenty of signs, bumper stickers, and t-shirts to promote awareness of different rare diseases–and now we’re asking you for yours!

Do you have a crazy/funny/weird or maybe just an empowering slogan specific for your rare disease? If not–it’s time to create one! We’re looking for the top three slogans/mottos for different rare diseases or rare disease in general.  So whether you’re Rallying for Rheumatoid Arthritis or just finding out that Rare is Everywhere we want to hear your battle cries!

Leave a comment with your original rare disease slogan and check back at the end of August to see if your motto made it as one of our judge’s top three final picks!

Remember, creativity counts!

First, second and third place winners will receive a prize pack from The Global Genes Project.

20 thoughts on “What’s Your Battle Cry? August Blog Contest Hunts for Best Rare Disease Slogan/Motto!”

  1. Heather Long says:

    When In Doubt – Refer Out.
    “When in Doubt – Refer Out” as a slogan promotes collaboration amongst physicians. In addition this phrase is a statement of empowerment and an assertion of self-advocacy and should be a part of every patient’s and care giver’s dialog with the their treating physicians.

    In 1964, Louis Lasagna, Academic Dean of the School of Medicine at Tufts University authored the “Modern Hippocratic Oath”. Part of this oath includes the statement, “I will not be ashamed to say “I know not,” nor will I fail to call in my colleagues when the skills of another are needed for a patient’s recovery.”

    Unfortunately, referrals amongst physicians are not the standard of practice that they need to be. One of the most frustrating aspects of managing my son’s care while he was alive was the lack of referrals we received to other specialists who could have made a life-changing difference for my son. Not only was it frustrating, but I feel that it was a major barrier to our ability to find a diagnosis and provide Cal with timely and appropriate treatments.

    I found that physicians either 1) do not know who or how to refer their patients to other physicians, or 2) are reluctant or refuse to refer out their patients to other specialists because they don’t want to admit that they lack the knowledge and/or skills to care for the patient. In either case, failure to refer a patient to another physician who could potentially help, creates an unnecessary barrier to that patient’s ability to receive timely and appropriate care and, potentially a diagnosis.

    First, when used as a slogan, “When in doubt, refer out” is a message inspiring collaboration and a reminder of the responsibility that physicians have to the patients in their care. For the physicians who don’t know who or how to refer their patients to another physician, it is an invitation to initiate efforts not only to find specialists who can help through research and networking but to promote changes within the system to facilitate easier methods of referral and collaboration. For the physicians who are hesitant to, or refuse to refer out their patients it serves as a reminder that his/her first priority is the wellbeing of their patient and that he/she is obligated “to do no harm”, even if that means relinquishing control of the patient’s care to another.

    Second, when spoken to a physician by a patient or caregiver, “When in doubt, refer out” conveys empowerment because it gives the patient or caregiver an opportunity to advocate for themselves or for the person they are caring for. When these words are spoken, it asserts a message to the treating physician that the orator is taking an active role in the plan of care and that they expect that the physician will have the wherewithal to do whatever is in the best interest of the patient

  2. Heather Long says:

    7000 RARE-ALITY Checks and Counting

  3. Julie F. says:

    NARCOLEPSY: NOT ALONE is the campaign I recently lauched to prove that narcolepsy is REAL and that we are NOT ALONE. Over 130 photos have been submitted from 31 states and 14 countries in just 10 days! https://julieflygare.com/narcolepsy-not-alone/

  4. Alysha says:

    POTS: The original way to drop it like its hot!!

    Dysautonomia dysfunction master!

    Hashimotos – even my thyroid can’t make up its mind!

  5. Heather Long says:

    1. Consider All Lives Through Collaboration

  6. Tami Arnold says:

    I have Cowden’s Syndrome. CS for me comes with lots of issues. Everything from thyroid problems, AVM, breast and colon cancer. My personal battle cry is I am Woman Hear me Roar. I know Helen Reddy did it first. Thats battle cry!

  7. “I’m Smiling on the Inside!” (Moebius syndrome is a rare neuromuscular disorder with symptoms including the inability to make facial expressions)

  8. ha! that’s great! I love it!

  9. Angie says:

    “Degranulated but not Destroyed” for Mastocytosis and Mast Cell Activation Disorder. Our mast cells degranulate releasing various chemicals throughout our bodies. These chemicals can effect every organ in the body. There is no cure and treatment can be complicated. Imagine living everyday as if you are or could be allergic to everything in your environment. Allergic to the point of anaphylaxis. Our symptoms can rage from nerve damage, memory and concentration problems, degenerative diseases, debilitating fatigue, muscle and bone pain, sores, rashes and muscle weakness. Imagine the worst flu you have ever had. Now imagine having this almost every day. To make things worse our triggers can change from day to day and moment by moment. We live never knowing what is around the corner. Due to the overwhelming number of symptoms and the lack of things that show up in medical test we can go years before an accurate DX is made. Meanwhile we are told that it is all in our head, left without proper treatment or worse we are treated for everything under the sun. Since medications and stressful situations are a huge trigger, this usually causes the disease to flair even more, many times putting us at risk for serious complications. This disease is invisible to the outsider, it is rare and it is real. Together we can bring awareness to a disease that goes years undiagnosed. While there is no cure there are treatment options. Knowing what you are fighting is half the battle. I will continue to bring awareness in hope that those suffering with a Mast Cell disease will one day be able to say “I may be degranulating but I am not destroyed!”

  10. angie says:

    Deganulated but not Destroyed for Mastocytosis and mast Cell Activation Disorder.

  11. Amanda Hanna says:

    My son has Cerebral palsy caused by PVNH (periventricular Nodular Heterotopia) and has severe physical disabilities which people regularly (and wrongly) assume also consitutes Intellectual disability so when kids ask why he’s in a wheelchair we tell them that his brain is so clever and uses up so much energy to think that he’s too tired to walk. We get a giggle, my son feels pride in his mental abilities instead of feeling like an invalid and it sends the message that not all physically disabled people are intellectually disabled. Works for us!

  12. Amy Clugston says:

    This came from SWAN USA’s community Hope for the Undiagnosed. My daughter wore her t-shirt to the Undiagnosed Diseases Program. “I’ve stumped more than ten doctors, what have you done lately”. It put some humor in the situation and the doctors got a kick out of it.

  13. Amy M says:

    for cornstarch? For glycogen storage disease. These patients are kept alive by frequently drinking cornstarch so they often have “cornstarch mustaches” like on the milk commercials.

  14. Amy M says:

    Got cornstarch?

    For glycogen storage disease. These patients have to drink cornstarch frequently to stay alive so they often have ‘cornstarch mustaches’ similar to the milk commercials.

  15. Rhiannen says:

    “Living a beautiful life in a broken body”
    I have Ehlers – Danlos Syndrome & another yet to be diagnosed connective tissue disorder.

  16. “I’m Quirky and I know It”
    “Normal is a dryer setting”
    “Eye contact is overrated”
    “My genes are quirky”

  17. Many of the autoinflammatory diseases are estimated to occur as a spontaneous mutation, or in the world at a rate of 1:1 million. To honor our patients for being so amazing and unique in general, despite their genetic disease, we have “1 in a Million” as a slogan on various t shirts, etc.

    We also have made some special “One of a Kind” customized logo and shirts for a few patients that have more than one rare disease or condition, or have a form of their disease that is like no one else.

    This is what they look like: https://www.printfection.com/nomidalliance

    Thanks for all that you do!

    Karen Durrant
    nomidalliance.org

  18. Megan deban says:

    “P-ms it’s not what you think” Phelan-mcdermid syndrome ( deletion 22q13)

  19. Hi Amy!

    Congrats! You’re one of our winners. Please email me at IlanaJ@rareproject.org to collect your prize!

    Best,
    Ilana

  20. HI Angie,

    Congrats! You’re one of our winners. Please email me at IlanaJ@rareproject.org to collect your prize!

    Best,
    Ilana

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