GREENSBORO, N.C. — As a rare disease patient or for families of someone fighting through a chronic health battle, it can be tough to find support.
It can feel as if your voice has been silenced. You can feel lonely and isolated by the rarity of the disease. That's why it's so important to find support.
Patients and families have options and can turn to nonprofit support and advocacy groups for help.
According to the National Institutes of Health, nonprofit support and advocacy groups may be referred to as nonprofits, patient support groups, advocacy groups or public charities.
There are three different types of nonprofit advocacy groups, consisting of condition-specific groups, umbrella groups or alliances, and general support groups.
Nonprofit advocacy groups normally offer support, medical information, resources, list of doctors or clinics, registry, research and clinical trials and advocacy.
The groups offer support by helping people connect with each other online and meeting in-person at yearly conferences, summer camps or local meetings.
Experts recommend making certain your support and advocacy group offers helpful and up-to-date information and evaluating the advocacy group’s staff members to see their personal stories, work history and background.
You can also turn to your local hospitals to find out if they offer support groups. Another option could be turning to social media like Facebook to find out if there's a support group for your rare disease.
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