About Rare Genes Movement
We exist for the space between diagnosis and direction.
Rare Genes Movement strengthens the rare disease experience through direct financial assistance, accessible resources, and meaningful connection — so rare never means alone.
We amplify voices, build connections, and help fill the gaps.
WHY WE EXIST
A rare diagnosis often brings more than medical complexity. Families may face financial strain, overwhelming information, fragmented systems, and community misunderstanding of visible and invisible differences.
While medical care and diagnosis-specific advocacy are essential, broader gaps remain — particularly in practical guidance, system navigation, and access to meaningful relief.
Not only in the early stages of diagnosis, but throughout the evolving rare journey.
300
m
people worldwide are living with a rare disease
80
%
of rare diseases are genetic in origin
5 - 7
yrs
the average diagnostic journey for a rare disease family
OUR ORIGIN
Family-Led.
Experience-Informed.
Rare Genes Movement was founded by parents navigating a rare genetic diagnosis firsthand. Its work is informed by lived experience, but built for families everywhere.
Our Founding Story
Every rare diagnosis has a story that begins long before the diagnosis itself.
Ours began with our son, Parker.
From the day he was born, we knew something wasn’t quite right. He was small for gestational age, struggled to grow, missed developmental milestones, and accumulated a growing list of medical concerns that never seemed to fit neatly into one explanation. We spent five years moving from specialist to specialist, searching for answers while learning one of the hardest lessons rare disease families face: each doctor understood one piece of the puzzle, but no one could see the whole picture.
In 2019, after years of appointments, testing, and advocating for our son, we received a phone call with the answer we had been desperately searching for. Parker had Wiedemann-Steiner syndrome, a rare genetic disorder caused by a mutation in the KMT2A gene and affecting only about 1,000 people worldwide.
We thought the diagnosis would finally bring clarity.
Instead, it brought an entirely new set of questions.
What specialists did he need? What did this mean for his future? Where could we find reliable information? Were there other families living this same experience? How would we navigate the emotional, financial, and practical realities of raising a child with a condition few people… even many healthcare providers… had ever encountered?
Like so many families, we quickly discovered that receiving a diagnosis was not the end of the journey. In many ways, it was the beginning.
As we searched for answers, we realized our experience wasn’t unique to Wiedemann-Steiner syndrome. Across thousands of rare genetic conditions, families were independently navigating the same overwhelming path… trying to interpret complex medical research, locate knowledgeable providers, access resources, connect with other families, and advocate for their children while simply trying to be parents.
We believed families deserved more than a diagnosis.
They deserved direction.
So in 2020, we founded Rare Genes Movement to help bridge the gap between diagnosis and direction.
Today, Rare Genes Movement strengthens the rare disease experience through trusted education, direct family support, meaningful connection, and innovative solutions designed to help families navigate life’s rarest challenges with greater confidence and less isolation.
Everything we do is rooted in one simple belief:
Rare should never mean alone.
Melissa White Boyer & Donny Boyer
Co-Founders, Rare Genes Movement
Rare Genes Movement was founded in 2020 by Melissa White Boyer and Donny Boyer, parents navigating their son’s Wiedemann-Steiner syndrome diagnosis. RGM is a registered 501(c)(3) nonprofit organization based in New Jersey.
What Makes Us Different
Built Across Diagnoses.
Focused on Shared Realities.
While conditions vary, many families navigate similar systems — schools, communities, financial pressures, and the emotional realities of rare life. We focus on:
- Providing financial relief where it is most needed
- Offering accessible guidance that reduces overwhelm
- Increasing community understanding of visible and invisible differences
- Strengthening collaboration across the rare disease ecosystem
Our Vision
A future where every child has access to the resources they deserve.
Where families feel informed and connected.
Where children with rare genes have dreams too.
Rare should never mean alone.
Rare Genes Movement
A registered 501 ( c )( 3 ) nonprofit organization committed to transparency, thoughtful growth, and long-term impact within the rare disease community.
STATUS
501 ( c )( 3 ) Nonprofit
BASED IN
New Jersey
REACH
Supporting Families Everywhere
