Survey for Those With Genetic Conditions

Home Forums Raynaud’s Research Survey for Those With Genetic Conditions

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  • #4062
    Lynn WundermanFrostie
    Keymaster

    The Genetic Alliance is looking for people with genetic conditions to participate in a survey. To be eligible, respondents must have been told by a doctor or other health care provider that they (or their child) have a genetic condition.

    The deadline for completing the survey is Thursday, June 6, 2013. If you qualify, here’s the survey link: https://www.surveymonkey.com/s/SurveyAccesstoCare

    #4298
    Greenargreenar
    Participant

    I have had Raynaud’s Primary since birth. My father who was a Nurse Practitioner (now retired) has also had Primary Raynaud’s since birth. I have one sibling who also has Raynaud’s. Both my father and I have participated in Raynaud’s clinical research studies. I doubt either one of us has been told that we have a genetic condition, however, isn’t it obvious if there are multiple people with it in the family and it was definitely carried with a paternal gene in this case. Neither my sibling or I have any children. Am I eligible to participate in this survey?

    #4318
    SarahSarah
    Moderator

    Hello greenar
    The deadline for this genetic study was June 6. There has not been a genetic link found for Raynaud’s although it does seem to run in families. This is mentioned often by forum members.

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