Coordinated database must to treat rare diseases: Experts
an hour ago
Mariecar Jara-Puyod,
Senior Reporter
The socio-economic impact of rare diseases which regional medical experts claim, affect 2.2 million children of the 2.97 million afflicted in the Middle East, is resolvable by way of a multi-sectoral collaborative approach.
Through a multi-sectoral collaborative approach, it is hoped that a well-organised and coordinated, national to regional constantly updated rare diseases database is achieved, towards the realisation of implementable country to region-wide policies. This calls for the active participation of and cooperation among policy makers, doctors and nurses, educators, non-government organisations, support groups and the pharmaceutical industry. Awareness campaigns as well as continuous research and development for therapeutics and advanced evidence-based scientific remedies are seen as solutions.
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New Book: Everyday Self-Care and Your High Needs Child, by author Natalie Brobin
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LOS ANGELES, Calif. /California Newswire/ Launch Pad Publishing is releasing the first book in a new self-care series and it’s the answer to caring for a child with high needs in our “sacrificial mom” culture. The author’s own experience parenting a daughter with Turner Syndrome, a rare genetic condition that can cause many health issues, inspired the book’s insightful, relatable advice.
“Everyday Self-Care and Your High Needs Child” follows author Natalie Brobin’s journey from confused young mother of a newborn with a heart condition to busy Turner Syndrome advocate trying to balance three kids, medical issues and her own life. The stress, coupled with the suicide of her best friend, eventually led Brobin to have a nervous breakdown, which started her on the path to recovery, discovery and everyday self-care.