Receiving a diagnosis of a rare disease, syndrome, or condition can be an overwhelming and isolating experience for caregivers. The Rare Diseases Caregiver support group, led by fellow mothers who have children with rare diagnoses, is here to provide a supportive space. We understand the complexities of navigating genetics, specialists, schools, and communities and that a diagnosis is just the beginning of the journey.
Our group is open to all, whether you’re a newly diagnosed caregiver or have been on this journey for a while. We strive to create an inclusive and welcoming environment where you can connect with other caregivers of individuals with a rare disease.
Our goal is that all participants will be able to form connections, feel empowered to be heard, and have opportunities to focus on their journey. We encourage resource sharing or being an ear if that is what someone needs.
Who can attend? All caregivers of a person with a rare disease or syndrome diagnosis. The age of the person with the diagnosis is not a factor.
When do we meet? Monthly. Visit the PHP Calendar for the most up-to-date information.
How do we meet? You will get it via the Zoom link in your email after registration.
Cost? FREE.
Registration: Please use the link here on the PHP event Calendar to register via Zoom for each meeting you want to attend.*
*PHP Support Groups are for parents/caregivers only. Due to the sensitive nature of the sharing by participants, no observers please. If you are a doctor or researcher and would like to contribute, please contact the group organizers directly.
Our goal is to help. Please let us know if we can do anything to improve! Thank you, and we look forward to meeting you.
Please note—this registration is not limited and is open to anyone regardless of location as long as they are a rare disease caregiver and can access Zoom.
We look forward to meeting you,
Tina, Victoria, and Joanna
Our support groups provide a safe space for parents and caregivers to share experiences, offer empathy, and build community. Due to the sensitive nature of these meetings, we ask that professionals and students not attend. If you are in immediate need or have extensive questions about services contact our PHP offices directly at 408-727-5775; we are here to assist you.
Accommodations: If you need accommodations to participate in the group or need help registering over the phone, please contact us at 408.727.5775 #139 or email [email protected] as soon as possible. We generally require 10 days to arrange accommodations and want to ensure you are included!