Our Needs
With the lofty goal of providing a Rare Disease Medical Advocate to every rare disease baby born into our world, we rely on the generosity and compassion of others to help execute on our mission.
Raise Funds
We have been championed with raising $3M in order to launch this one-of-a-kind service to the most vulnerable of humankind; rare disease babies.
Partnerships
We have partnered with Children’s National Medical Center and its Rare Disease Institute to serve their patients that are born or introduced after birth. We need partnerships with other Children’s Hospitals across the country to make a meaningful impact.
Volunteers
As part of our fundraising efforts, we host annual events. We are constantly in need of volunteers to share their time, expertise and compassion with our supporters and donors.
Community
1 out of 10 American’s live with a rare disease. Some are more noticeable than others. We need to remember that these individuals are very much understanding of your approach or lack thereof. Instead of staring from a distance or quickly ushering kids away from these people, we emplore you to engage the parents, communicate your curiosity and encourage your kids to say hello and interact with our community.
Connections
If you know of a family who has welcomed a rare disease baby into this world and their home, we’d love to meet them. We’d love to learn about their experience, what worked and what was a challenge. This is how we continue to improve the overall outcomes and experiences for the rare disease babies born tomorrow.
