Rare Disease Caregiver Resources

February 16, 2023

National Caregiver Day in the United States falls on the third Friday of February every year, on February 17th in 2023. As a caregiver, you are one of millions caring for a loved one in the U.S., and often, that can feel overwhelming. But being one of millions also means that there are others that have walked this path before you, so they can help guide you.

As other caregivers can tell you, they were helped by someone else at some point in their journey. If you are new to the caregiver role, or transitioning into a new part of the journey, reach out to them. If there is someone that you feel could use your guidance, step in and offer them a hand. If you’re looking for some ideas to help someone or need direction yourself, here are some ideas for you:

Caregiver’s Intensity Quiz

Are you taking care of yourself, or taking on too much? Measure just how much you are taking on by taking the Caregiver’s Intensity Index on the Archangels website. Thank you a member of our RARE Portal for sharing this resource!

Toolkits for the Caregiver

Caring for Yourself and Your Children

2022 Patient Advocacy Summit Sessions

These sessions were part of the Caregiver track at the 2022 Patient Advocacy Summit in San Diego, California.

Preventing Caregiver Burnout (Video)
Grandparents as Caregivers (Video)
Grieving as a Community (Video)
The RARE Siblings Experience (Video)
Guide to Palliative Care and Complex Care (Video)

Circle of Care Guidebook

This guidebook was created by the National Alliance for Caregiving in partnership with Global Genes to help caregivers wade through the myriad of challenges that come with caring for a loved one living with a rare disease. Click here to access.

Caregiver Stories

Advocating for You, the Caregiver (Blog)

Creating Care for the Caregiver: Five Minutes at a Time (Blog)

One Woman’s Journey as a Caregiver to a Husband with Frontotemporal Dementia (Podcast)

Supporting Caregiver Decision-Making (Blog)

Resources at Global Genes

RARE Concierge – Our patient services team will help you in the next steps of your journey. Whether you are undiagnosed, newly diagnosed, have questions about genetic testing or counseling, or looking for treatment options or financial advice, our RARE Concierge team can help you.

Global Advocacy Alliance – Is your patient advocacy group a member?  Check the list here!

RARE-X – The RARE-X Data Collection Program enables rare patient communities to collect robust, secure, patient-reported data that is patient-owned. Communities are leveraging RARE-X’s novel governance and technology infrastructure, which supports patients and advocacy groups in making that data widely available for researchers worldwide. Are you ready to learn more?

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