For rare disease patients, hope becomes more than a feeling; it’s a vital part of the journey. During the holidays, this sense of hope carries a unique importance. While others celebrate with family and friends, patients and their loved ones often face the uncertainty of their condition and treatments, amplifying the need for a source of strength and support. Hope can lift spirits, renew resilience, and create moments of joy amidst the challenges. It connects patients to a community that understands, offering the comfort that no one is alone in their journey. This holiday season, hope is everything.
This holiday season, we’re sharing stories of hope from the rare disease community, celebrating the strength and resilience of patients, caregivers, and supporters. Through these personal stories, we’ll show how hope fuels the journey—turning challenges into moments of courage and connection. Each story represents the heart of our community, capturing the power of friendship, support, and small victories. By sharing them, we’re spreading hope and reminding everyone that they’re not alone. Join us in celebrating these inspiring voices, offering hope to others navigating their own paths this season. Together, our stories make the season brighter. (See the stories as they are released at the bottom of this page!)
Please consider donating this holiday season to help keep vital programs like support groups, educational events, and mentorship alive for the rare disease community. Every dollar goes toward providing the resources and connections that turn struggles into moments of strength. Your support ensures that no one has to face their journey alone. With your help, we can continue offering hope and making a real difference for patients and caregivers who rely on these lifelines.
Donate.
Your donation, of any amount, supports a multitude of resources we provide for rare disease patient. These resources include educational events and webinars, our biennial Life Fest conference, #GISTeducation materials, Mentor/Mentee opportunities, support groups, curation of our world-class, global Patient Registry, one-on-one consultations, a current, updated list of global specialists…and a team of advocates involved in patient-powered research, elevating the patient voice in research & clinical trials, collaborating in key research projects, moderating global virtual tumor boards and connecting patients & caregivers with resources they need across the globe. Our small, professional team in Wayne, NJ is mighty – and strengthened by over 150 volunteers across the world.
Show your support.
If you’re a patient, share your story. Do it on social media and use the hashtag #HopeForTheHolidays #GiveHope and tag @liferaftgroup.
If you’re a loved one or caregiver or family member, stand with our community on social media – post a photo showing that you’ve chosen to bring hope through donating to those who need it most this holiday, hashtag #Standing4HopeLRG #GiveHope @liferaftgroup.
Create a virtual fundraiser.
On Facebook or Instagram you can raise funds for The Life Raft Group. To make the most out of your fundraiser on social media, follow these tips:
1. Aim high! Set your goal amount to $500 or $1000. Send to ALL your contacts.
2. Share your story! Share how The Life Raft Group has impacted your journey with a rare disease & what hope means for you this holiday season.
3. Post often! Set an end date of a month and remind your followers often to donate before your fundraiser ends.
