News
PHACE Awareness Week - March 19-26, 2023
Learn more about the weeklong events.
The PSC Attends PeDRA Meeting
November 2022
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The Pediatric Dermatology Research Alliance (PeDRA) is a collaborative research network, providing a platform for scientists in the field of pediatric dermatology to collaborate and conduct research. PeDRA includes more than 280 scientists across more than 130 institutions as well as patient advocacy organizations, industry partners, and other supporters committed to improving the lives of children with skin disease. PeDRA works by identifying important research questions, providing support to help studies succeed, and building an empowered community through conferences and education.
The PSC is a member of PeDRA, and for many years have attended their annual conference, making connections with scientists, and being part of important conversations. This year, the meeting agenda included a live session with Dr. Lindsey Criswell, the new director of NIAMS, sessions on various skin related disorders, including birthmarks, poster presentations on the current research studies, and an oral presentation on the 10 and under study, which many PSC families participated in. Other highlights of the meeting...connecting with directors of vascular anomalies centers, medical students with an interest in learning more about PHACE syndrome, and early investigators working with physicians such as Drs. Drolet, Frieden and Siegel.
Pictured above, Dr. Dawn Siegel, Guinnie and Jill Salas, PSC Co-founder, board member and treasurer.
Rare Caregiver Respite Program
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This first-of-its-kind assistance program is designed for caregivers of a child or adult diagnosed with a rare disorder. NORD understands that caring for a loved one is a generous gift that demands significant amounts of time, attention, patience and dedication.
The Respite Program provides financial assistance to enable the caregiver a break to attend a conference, event or simply have an afternoon or evening away from caregiving. Financial assistance will be granted up to $800 annually for those who qualify.
What care may be covered?
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Registered Nurse (RN)
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Licensed Practical Nurse (LPN)
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Certified Nursing Assistant (CNA)
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Home Health Aide (HHA)
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Non-professional caregiver
Who is eligible?
The caregiver must be a US citizen or permanent resident of the United States for at least six months with evidence of residency, and be willing to undergo a financial evaluation of need to determine if they fall within the program’s financial eligibility guidelines. Additionally, the patient for whom care is being provided must have a confirmed rare disease diagnosis.
How do you apply?
Awards are granted on a first come, first served basis to eligible individuals. There is no fee to apply. Contact a Patient Services Representative at 203.616.4328 or email CaregiverRespite@rarediseases.org.