Helpline: Rare Diseases Support

The Challenges of Living With Rare Disease
Living with a rare disease is, no doubt, a considerable challenge. It can affect the patient's mental health and even lead to severe conditions, such as depression. Caregivers for people having rare disease also experience a lot of problems because it hurts to see a loved one suffering.

The emotional pain surmounts when a primary caregiver for a family member discovers that there isn't an effective treatment or support system available for the patient. A rare health disease is a genetic disease, and for most of them, no treatment is available. They can be life-threatening in some cases.

The Caregiver Hub is an online support group for family caregivers who share similar experiences. Simply connect with one of our fellow members who have experience caring for someone with a rare disease. They can provide you with emotional support and share helpful information with you.

Help for People With Rare Disease and Their Caregivers
In the United States alone, 72 percent of family caregivers for people with rare disease experience depression, whereas 89 percent suffer from stress and anxiety. Reduced socialization and isolation are also frequent among patients and families. If you are a caregiver for someone with a rare disease and are experiencing the above challenges, it's time you should seek support from individuals sharing similar experiences.

Our fellow caregivers at The Caregiver Hub can provide you with reliable and useful information to improve caregiving for your loved one. Moreover, they are ready to give you support if you are experiencing mental, emotional, or physical exhaustion or stress. Many of our members are highly experienced in caring for people with rare disease. They know how it feels when you are a new caregiver and are available to extend support to you and your loved one.

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We have a Sturge Weber Warrior/Advocate on staff who works to help the 1 in 10 Americans with Rare Diseases
I care(d) a total of 46 years for a female
I care(d) a total of 2 years for a male
I care(d) a total of 3 years for a malefemale
I have years of experience I can share if it will help.
I care(d) a total of 7 years for a malefemale