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2 people are interested
Care Room helpers during rare disease family conference
ORGANIZATION: NBIA Disorders Association
Please visit the new page to apply.
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2 people are interested
During our biennial family conference we set up care rooms for individuals unable to sit through presentations by researchers and others on NBIA disorders. Those needing care are individuals with NBIA disorders, and younger family members.
We have arranged for activities, and nursing staff in the care rooms, but rely on community volunteers to assist with various things. Friday care room needs are 8:30 a.m. to 12:30 p.m., and 12:45 p.m. to 6:15 p.m., Saturday 8:00 a.m. to 12:15 p.m., and Sunday 8:45 a.m. to noon.
We are grateful for any time slot you can fill! Families are nearby and our coordinators will be able to contact them should the need arise.
More opportunities with NBIA Disorders Association
No additional volunteer opportunities at this time.
About NBIA Disorders Association
Location:
2082 Monaco Ct, El Cajon, CA 92019, US
Mission Statement
In our drive to find a cure for NBIA, we provide support to families, educate the public and accelerate research with collaborators from around the world. Neurodegeneration with Brain Iron Accumulation (NBIA) disorders are a collection of 10 identified conditions all sharing the characteristic of excessive iron in the brain. The disorders have profound impact on those affected, and their families. They are ultra-rare disorders, affecting 1-3 people per million.
Description
Founded in 1996, the organization conducts a variety of services in support of families while furthering research by granting funds, primarily raised by families affected by the disorders.
Goals:
- To provide a supportive environment in which people affected by NBIA and their loved ones can share needs, concerns and experiences.
- To share up-to-date information about treatment and care options with all members of the NBIA community.
- To increase recognition of NBIA among clinicians and other healthcare professionals and promote early diagnosis and access to optimal care.
- To participate effectively in the international NBIA community and foster collaboration with our affiliated NBIA lay advocacy groups in other countries.
- To build an expanding base of committed contributors who will help provide funds to achieve our vision.
- To encourage, guide and fund research to improve understanding, diagnosis and treatment, and ultimately, find a cure for NBIA disorders.
CAUSE AREAS
WHEN
WHERE
Embassy Suites by Hilton5055 International Blvd.conference centerN. Charleston, SC 29418
DATE POSTED
April 8, 2019
SKILLS
GOOD FOR
- People 55+
REQUIREMENTS
- Must be at least 16
- At least one shift Fri 8:30 a.m. - 12:30 p.m., 12:45 - 6:15 p.m., Sat 8:00 a.m. - 12:15 p.m., Sun 8:45 a.m. - noon.