May. 08, 2013
Posted at May 8, 2013 9:29 pm by Stefanie Putkowski

2 Responses to Rare Disease Researchers – They Really Do Care!

  1. franzen,t says:

    I read this article on Dr. Said – beautiful, while looking at your site for research grant funding. I do hope your research grant funding will be available and compatable for the research and increasing knowledge, awareness of us and our need for ongoing accessment, treatment and pain measures, etc. from birth through adulthood. Right now there is nothing. Only 3 Dr’s I know of in the world doing research and in desperate need for funding and help.

    Physicians and specialists know nothing about Klippel-Feil syndrome, sometimes cannot even pronounce it. Never heard of it or are taught only one thing about it in med-school (it’s a rare skeletal cervical malformation). That’s all. Doctors don’t hear us, believe us, care to help us, know who can help us, or what to do with us because we’re having problems (esp. adults).

    I hope you will CARE for US, Klippel-Feil Syndrome and check out our website, browse through it, read things, believe and acknowledge we are real human beings with real problems and issues and concerns that need to be acknowledged by the medical communities as well as others and treated with the ethical oath of compassionate care and respect deserving of all individuals regardless of ability or disability, race, color, ethnicity or gender.
    We want to live life to the fullest, find help and treatments, protect and cure our children, and compassionately help our adults living with pain and limits and on-going medical needs.

    One of you Rare Disease Day Ambassadors,
    Theresa F.

  2. John Smith says:

    I agree. Great article.

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