As a patient-led community, we are always appreciative of patients, friends, family or caregivers looking to help support this important work. Here are a few ways you can help make a difference in outcomes for patients with these rare and terminal diseases.


Guest authoring posts is a new, big wave in journalism. If you are a talented writer, we would love help writing relevant and accurate articles on topics of importance for patients. For each disease community this could be on subjects such as: getting through treatment, treatment side effects, health and survivorship, new initiatives in the disease space, up-and-coming research, major events, major education seminars and conferences, collaborations within the disease community, best nutrition, facility highlights for centers with disease specialities and other topics patients would see as important.

If you would like to become a regular monthly contributor, please contact us at with a sample of your writing.


Help us get the word out by helping increase our social media presence. Share posts, find new followers, and help us spread the word about our patient and family/caregiver Facebook groups. We need social media help in all of our disease communities, so select the one you are most passionate about and lend a hand!


Help us run events or create your own! Popular events include walks, runs, galas, carnivals, pancake breakfasts and others. Or join a walk in your area and create a CrowdCare team!