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Rare Disease Awareness Day Critical As Patients Struggle During COVID Times


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February 26, 2021 (PRLEAP.COM) Health NewsNational Rare Disease Awareness Day (RDAD) takes place during the last week of February. This year, the awareness message is even more critical. The pandemic has caused numerous difficulties for rare disease patients, families, and the healthcare community. Major obstacles have included a delay in diagnoses, limited access to treatments, and the lack of clinical trials.
Helping to spread the word on awareness is Greenwich, CT- based, Fibrolamellar Cancer Foundation (FCF), a non-profit organization formed to fund research, build awareness and provide patient support for an aggressive liver cancer that strikes teens and young adults who are typically not diagnosed until the disease is in an advanced stage. FCF was founded in 2009 by 27-year-old Tucker Davis, who lost his life to Fibrolamellar on Rare Disease Day in 2010, after an 18-month fight. ....

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The Day - Osten, Conley advocate for families of those with PKU, a rare genetic disorder


Published February 09. 2021 4:05PM 
Two state lawmakers from southeastern Connecticut have introduced legislation that would require insurance companies to pay more of the cost of the special food needed by people diagnosed with phenylketonuria, or PKU.
The rare inherited disorder causes an amino acid called phenylalanine to build up in the body, according to the Mayo Clinic. PKU is caused by a defect in the gene that helps create the enzyme needed to break down phenylalanine. Without the enzyme, a dangerous buildup can develop when a person with PKU eats foods that contain protein or eats aspartame, an artificial sweetener. This can eventually lead to serious health problems. People with PKU babies, children and adults need to follow a diet that limits phenylalanine, which is found mostly in foods that contain protein. ....

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