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The information and materials accessed through or made available for use on any of our Sites, including, any information about diseases, conditions, treatments, or medicines, are for informational purposes only. The Content is not intended to be and is not a substitute for professional medical advice, diagnosis, or treatment, and your participation on our Sites does not create a healthcare professional-patient relationship. You should consult a doctor or other qualified health care professional regarding any questions you have about your health or before making any decisions related to your health or wellness. Call your doctor or 911 immediately if you think you may have a medical emergency.
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Ehlers Danlos Syndrome community.
It always hurts when a loved one gets sick. However, the emotional toll and stress increases when you are the primary caregiver for a close family member or friend living with a rare condition for which effective treatments and sufficient support services may be lacking.
The National Alliance for Caregiving (NAC), in partnership with Global Genes, a rare-disease advocacy organization, hope to glean greater insights into just what challenges unpaid caregivers of loved ones with rare conditions are facing. The groups have joined forces to survey more than 1,400 American adults currently providing unpaid care to a child or adult with one of more than 400 rare conditions.
The Ehlers-Danlos Society has announced the largest single donation in its 33-year history to establish an international research network of leading physicians, geneticists, and other health professionals devoted to finding the underlying genetic markers for hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD).
From Transformational Gift to Ehlers-Danlos ‘MOONSHOT’
The anonymous gift of $1 million dollars, represents the largest individual gift in the history of hypermobile EDS research.
“Because hypermobile Ehlers-Danlos lacks a known genetic cause, this truly has the potential to be a transformational gift,” states Lara Bloom, International Executive Director of The Ehlers-Danlos Society, a global leader in Ehlers-Danlos research, collaboration, and support.
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If you are a doctor or other qualified health care professional, you should not offer any medical advice or treatment on our Sites, nor should you allow the content of our Sites to substitute for your own medical judgment. Please thoroughly review the information provided on our Sites before deciding whether any of the products, services, or treatments therein are right for you or others.