Saturday, February 25, 2012

Global Genes Project and Fund

My Andrew born 29-9-1989, died 22-11-1989, aged 55 days. He had Campomelic dysplasia. They think his gene SOX9 is faulty. Babies are still dying.

My friend, Ellen had two CD babies :
Happy 8th birthday sweet Angel! Avery bravery! Born at 9:04AM eight years ago today.
Avery was born 2/21/2004. She lived 33 hrs and died 2/22/2004. Hope was born after Avery. The doctors did not believe that we could ever have another child with Campomelic Dysplasia.
Global Genes Project and Fund
Non-Profit Organization · Dana Point, California


World Rare Disease Day is a time when the global community comes together in unity, to build voice, awareness and support for the hundreds of millions of patients and their families affected by rare disease.

The Global Genes Project™ is a campaign sponsored by the RARE Project helping individuals and organizations to participate in this annual Day Of Unity.

Show your support, find resources, and for ideas on how you can help raise RARE Disease Awareness on World RARE Disease Day.

Can you help us spread our "1 Million People for Rare Disease" message so our voices can be heard in Washington? Share with family, all of your friends and on your personal pages. Ask them to join together with us and others in the rare disease community who are fighting for treatments and cures. Rare Disease Day is Feb. 29.

Please also join the discussion at or

For questions related to Global Genes Project and World Rare Disease Day activities, please contact

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