Behind the Mystery of: Rare and Genetic Diseases


Internationally renowned physician, Dr.Olaf Bodamer, and mother, Mary Pruitt for our new series “Behind the Mystery: Rare and Genetic Diseases”

Today, “The Balancing Act” on Lifetime Television aired their first segment Behind the Mystery of: Rare and Genetic Diseases, a series produced with the intention of introducing and uniting patient, physician, and scientist with research, education and opportunity to revolutionize the way our health care system works for the Rare and Genetic Minority.

Today’s episode included internationally renowned physician, Dr.Olaf Bodamer, and mother, Mary Pruitt of LAL Solace to help build awareness for the rare disease, Lysosomal Acid Lipase Deficiency (LAL).

By partnering with The Global Genes Project, The Balancing Act is able to provide available support to patients diagnosed with rare and genetic diseases, and to give hope with news of clinical trials and new treatments. Together, we can begin a new wave of advocacy and support for the rare community.

The Balancing Act supports and celebrates patient advocacy groups and industry leaders, who inspire connect and guide patients as they move forward through their journey towards treatments and a cure.

 

 

 

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Global Genes Comments

  1. I think my message got erased.
    I had a rare tumor (paraganglioma) by my aorta and dr thought I had pheochromocytoma on adrenal glad after imaging scans. Turned out to be benign cortical nodule with medullary hyperplasia. Feeling well. Have you discussed these two rarities. Thank you.

  2. Dolores Rincon says:

    Hello, I was diagnosed with a paraganglioma between my aorta and pulmonary arteries. It took 4 months to get diagnosed b/c of rarity. Had successful open heart surgery and feeling well. Also dr thought I had pheochromocytoma on adrenal gland after MIGT, CT, Pet scan. Turned out to be benign cortical nodule with medullary hyperplasia, rare also. Doing well. Have you had programs about these two rarities? Thank you.

  3. Aurea Aviles says:

    My grandchild has micro duplication 7q11.23. She’s 15 years old and suffers from a rare liver problem, might need a transplant. I would like to know of any other case similar to hers. Just like her UNIQUE condition these children are very dear to their family, the more we know the more we can help them

  4. Aurea Aviles says:

    My granddaughter has micro duplication of 7q11.23 chromosome, she’s 15 years old, and has a serious liver disorder. I’ld like to know
    of any other case out there. I welcome any information on this UNIQUE condition.

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