Happenings
Where our impact lives — from local gatherings to national conversations.
Asbury Park Press Feature
Early coverage that helped bring rare disease awareness to New Jersey families and elevate the need for broader support and advocacy.
News.
News highlights the stories and moments that showcase how Rare Genes is growing — building awareness, supporting families, and expanding our impact across the rare disease community.
Micro Grant Recipients
Our Micro Grant program provides direct support to families across the rare disease community… offering help with therapies, adaptive equipment, communication tools, and essential care needs.
Local News Spotlight
Community reporting that highlighted our beginnings and the growing effort to support families navigating rare genetic conditions.
Pointsgiving
Pointsgiving is an annual community day of giving created by the Kiwanis Club of Point Pleasant. Now in its third year, it brings together local nonprofits, families, volunteers, and businesses for hands-on projects and shared moments of generosity. We were grateful to join so many incredible organizations in supporting the community and raising awareness for rare disease families.
Events.
Our events bring families, advocates, and partners together… raising awareness, building community, and creating moments that move the rare disease conversation forward.
Galien Foundation Summit
A meaningful moment for Rare Genes… joining leaders in medicine and innovation to elevate the role of patient and parent voices in shaping the future of rare disease care.
Stripes for Parker
The event that sparked the Rare Genes Movement. What began as a simple show of support grew into a tradition of unity, awareness, and connection among families and advocates across the country.
