We need your help!

Does your doctor get thumbs up or thumbs down?

Was your or your child’s rare disease diagnosis delayed due to lack of knowledge by doctors?

The Global Genes|RARE Project exists to raise rare disease awareness, unify, equip and empower a vibrant rare disease community.  Our mission to fund innovations to support “in-their-lifetime” rare disease research is also a critical component to why we exist.

By providing us with your experiences as a patient with a rare disease, you can help us meet our objectives!

Please take 10 minutes to tell us about your experiences with getting a rare and genetic disease diagnosis – your feedback on the process with your doctor could help lots of people with rare diseases!

Each participant who completes the survey will be entered into a drawing to win a $200 VISA gift card!

Click this link and take the survey!

4 thoughts on “Patient Survey: We Need Your Rare Disease Experience”

  1. Alma m mulles says:

    I am from the Philippines. My nephew who is on his 30’s was recently diagnosed with bechets disease which is not common among filipinos. I would like to get more information on the said dusease as well as treatment. His right eye was the first one to be affected and the medications prescribed were so expensive. He used ti drive a rental van but he has to stopped working as his vision is no longer good. His wife is just a sales clerk and they still have a young daughter .Is there any support group on thus disease or any information you can provide is greatly appreciated

  2. I am a Bechet’s patient and all I can say is that sometimes the treatment is worse than the disease I was diagnosed in my 30s and I was given steroids to help all they did was make me put on about 4 stone and I couldn’t breathe or walk so now I am on methotrexate which can help but it makes me vomit and my blood results are always abnormal anyone who has this condition should be careful what they are given and research it first

  3. Himanshu Tuteja says:

    Hello, I’m from india and my mother has been diagnosed with cyst in her spinal cord due to which she is not able to walk and she has lost control over her leg muscles.Left leg was first to get affected and now their is weakness in right leg also.she can feel everything in her leg but is unable to move them.she was even admitted to AIIMS and they diagnosed the cyst but the surgeon their, didnt perform the operation as according to them cyst was not reason and they even said that cyst in spinal cord are rare. After that my mother also went through sports therapy but that also was of no use . so someone please suggest is operation safe or their are any other option or we should opt for options in ayurveda.

  4. Maria says:

    I tried to connect with your link above for the rare disease doctor survey but couldn’t. Dercums disease but cannot find a doctor who will listen, research, hell, even read a white paper on the subject!
    This has advanced to unbearable some weeks, I don’t know what to do or where to go!

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