Contents tagged with newsletter

  • Tags: newsletter

    Dear BBS Family, This will be my last contribution to the BBS Newsletter.  It has been a delight to be part of the effort to bring light and hope to the BBS community.   Yesterday, I …

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  • Tags: newsletter

    Dear BBS Family, I hope this letter will excite you about the progress of the Clinical Registry Investigating BBS (CRIBBS).  We now have more than 700 individuals participating in CRIBBS.  …

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  • Tags: newsletter

    Dear BBS Family, Happy Rare Disease Day!  Bardet-Biedl syndrome is one of ~7000 rare diseases but it is the most important rare disease for each of us.   I am proud of the efforts of …

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    Dear BBS Family, I hope you have enjoyed a wonderful holiday season.  Here is our monthly update on BBS activities.  Please take time to review the January updates.  There are a …

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    Dear BBS Family, I want to thank each of you for participating in the Clinical Registry Investigating BBS (CRIBBS).  The registry continues to grow and promote understanding and better care for …

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    Dear BBS Family, Happy Memorial Day (United States) and to all BBS Family members regardless of your homeland.   I want to express my deepest appreciation to all those that have made …

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  • Tags: newsletter

    Dear BBS Family, It is hard to believe that May is here. For those of us that live in cooler parts of the northern hemisphere we are excited for the arrival of spring while we recognize that it is …

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  • Tags: EOY, End of Year, newsletter

    Dear BBS Family, 2020 is coming to an end.  I think all of us are happy to say “Good Bye” but it was a year marked by noteworthy progress giving new hope to individuals affected …

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