24-hour Family Support Services Offered to PWS Community in US

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by Forest Ray PhD |

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Through the end of the year, the Prader-Willi Syndrome Association USA (PWSA USA) is offering 24-hour family support services to everyone in the Prader-Willi syndrome (PWS) community.

The association’s family support team will provide emergency access to information and support for urgent medical and behavioral emergencies. Those in need may access these services by calling 800-926-4797. More information can also be obtained by emailing [email protected].

“The past year has been challenging for everyone, and this is especially true for families affected by PWS,” Paige Rivard, association CEO, said in a press release. “In addition to the struggles our community faces on any given day, the global pandemic has brought heightened health and safety concerns, isolation and loneliness, and disrupted routines and schedules.”

“Our organization has experienced a significant increase in requests for help as families learn to navigate a ‘new normal’ and in response we are introducing 24-hour Family Support services,” she said.

This year has been challenging not only for those with PWS, but for the entire rare disease community as well.

In April, the International Prader-Willi Syndrome Organisation launched a survey to fill in key knowledge gaps about the risks that COVID-19 poses to the PWS community. Early results suggest a low rate of infection among this population, but the fact that respondents were generally in good health, and none had been hospitalized, warrant caution before drawing definitive conclusions.

In a similar vein but casting a wider net, the Rare Diseases Clinical Research Network initiated an online survey to understand how the pandemic has affected those living with rare diseases, as well as their families and caregivers.

Many rare disease clinical trials experienced disruptions and delays. While companies have largely adapted trial protocols to manage the risk of COVID-19, the effects of social distancing, school closures, disruptions in regular care, and conversion to telehealth visitations continue to be explored.

Financial hardships added to the increased burden of health risks for many.

In a survey of 772 people living with rare diseases, administered by the National Organization for Rare Disorders, 29% reported temporarily or permanently having lost a job due to COVID-19, 40% reported loss of household income, and 11% reported loss of health insurance due to job losses.

To help with living expenses, NORD launched a financial assistance program for people in the U.S. rare disease community experiencing monetary challenges due to the pandemic.

The increased family support services now offered by PWSA USA arrive in light of these challenges.

“We know our families need extra support during these uncertain times and we are honored to be here for them,” Rivard said.