The Rare Village

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The Rare Village

Non-profit resources and podcast for Rare Disease Families

02/06/2026

Don't miss ASGCT’s Empowering Patients 2026! This free virtual event is a must-attend for anyone looking to get patient-focused education and stay informed on the timely topics to support the patient journey in CGTs: asgct.org/empowering

02/04/2026

One Wish Wednesday 🐎👸🏼 Meet Kaylee!

She was born in 2013, perfectly healthy and full of personality.
By age four, she started falling.
By age six, she had trouble walking.
Then came her devastating diagnosis: IRF2BPL.
By age seven, she lost her ability to run, then her ability to walk.
Age eight brought a g-tube, after Kaylee lost her ability to eat and became wheelchair-dependent.
Then, when Kaylee was ten years old, she lost her ability to speak.
Now, at eleven years old, Kaylee battles scoliosis, declining muscle tone, fragile bones, respiratory weakness, seizures, and vision loss.

But when you get to know her, you see a beautiful warrior with a love of all things nature, animals, and enchantment. She has an incredible spirit, a big personality, a hilarious sense of humor, a wild love of music, and an unmatched zest for life. She touches the soul of every person she meets, and she is the bravest fighter her family knows. They try to find the joy in every day while they continue to pray for a miracle.

For 25 million children and their families living with rare diseases in North America, this is their reality. They celebrate each birthday not knowing if it will be the last.

As for Kaylee, her birthday wish is one thing she has in common with many girls her age: to be a fairy princess with a horse for a day. While we may not be able to make this happen for Kaylee, we can (and must) continue to fight for a cure.

Learn more about kids like Kaylee at www.25millionwishes.org 💝

01/23/2026

This Featured Fund Friday, we are proud to spotlight Cure DHDDS.

Cure DHDDS was founded by parents who were suddenly thrown into a world with very few answers after two of their children were diagnosed with a DHDDS gene mutation. Like so many rare disease families, they did not have a roadmap, so they created one.

Today, Cure DHDDS is a family-led, volunteer-run organization working to connect families, support patients, and push research forward for people living with DHDDS and NUS1 gene mutations. Their mission is to help families, grow the community, and drive the science needed to create real treatments.

What makes Cure DHDDS stand out is how deeply they bridge families and researchers. They bring together a global network of scientists, clinicians, and genetic experts who are actively studying DHDDS, epilepsy, metabolism, and congenital disorders of glycosylation. At the same time, they provide connection and support for families who are navigating this diagnosis every day.

Through scientific exchange meetings, patient registries, and research partnerships, Cure DHDDS is helping build the foundation needed to move toward therapies and, one day, a cure.

To support their work, visit https://give.rarevillage.org/campaign/692915/donate 💚

01/21/2026

One Wish Wednesday 🐎 Meet Iris!

Iris has Specific Antibody Deficiency, which means getting sick is a constant worry for her and her family. Life looks a little different when you are always watching for germs, missed school days, and hospital visits.

Her family says it best:
“We are tired, we are thankful, we are hyper-vigilant, we are loved, we are afraid to make plans, and we celebrate a lot of little things with ice cream.”

Iris loves horses. Her birthday wish is to compete in equestrian shows and someday have a horse of her own. Being around horses gives her confidence, joy, and a break from thinking about being sick.

Join our movement to celebrate the unique and beautiful lives of the 25 million rare children in North America at www.25millionwishes.org 🤝

01/14/2026

One Wish Wednesday: Meet Mia! 🩷

Mia was born with a genetic anomaly. At the time, there was no test to diagnose her condition. Seventeen years after her birth, advances in genetic sequencing finally brought a diagnosis: CLIFAHDD syndrome.

Mia has significant challenges both developmentally and cognitively. She is nonverbal and requires total care. She is exclusively g-tube fed.

While her life has been difficult, she brings so much love into her family's life with her smiling eyes and giggles. They love her more than anything! And her birthday wish reflects that: all she wants are hugs and kisses. 🥰

To learn more about kids like Mia, visit www.25millionwishes.org 🎂

01/09/2026

Featured Fund Friday 🧬 Beyond Primrose: ZBTB20 Foundation

Primrose Syndrome is caused by a mutation in the ZBTB20 gene. It leads to intellectual disability, motor and speech delays, seizures, hearing and vision loss, endocrine dysfunction, low muscle tone, and progressive muscle wasting.
Primrose is a progressive neurodegenerative condition—meaning symptoms steadily worsen over time, bringing serious, life-altering medical challenges.

Today, we have no treatment, no roadmap, and very little research. Families are told, “there’s nothing we can do” But this community refuses to accept that.

They've united with researchers, clinicians, and partners who are determined to change the future for their children before more time is lost.

Your donation becomes part of a global effort to fight for answers, treatment, and hope—and to push urgently needed research forward for every child living with Primrose Syndrome.

To learn more about Beyond Primrose: ZBTB20 Foundation, visit https://give.rarevillage.org/campaign/749275/donate

01/07/2026

One Wish Wednesday 🎂

This week’s wish comes from Ireland, a brave little girl born with a devastating CACNA1A gene mutation. Although the nonprofit N-Lorem is creating Ireland’s personalized treatment at no cost, she still must be hospitalized every 1–3 months for spinal infusions. Because the medicine is experimental, insurance does not cover these hospital stays, which are projected to cost up to $250,000 each year.

To learn more about Ireland’s story and how you can support her, visit: give.rarevillage.org/campaign/664895/donate

12/19/2025

This week’s Featured Fund Friday is Birdie’s Flight for a Cure. Birdie is a one‑in‑a‑million child facing a rare KDM5C diagnosis. Her family started Birdie’s Flight to raise funds for research to develop an antisense oligonucleotide therapy with N‑Lorem designed to address the effects of her mutation.
Birdie's Flight for a KDM5C Cure

If this research succeeds, Birdie won’t just have a chance at better health, she will blaze a path for others who share her diagnosis. Every share, donation, and story spread brings them closer to that goal.
Birdie's Flight for a KDM5C Cure

Learn more and support Birdie’s mission to give her and others with KDM5C a chance to thrive: Visit www.birdiesflight.com today. 💜

12/17/2025

Sammy was diagnosed with LGMD2I/R9 at just 2 years old. This ultra-rare, progressive, muscle-wasting condition has made everyday life a challenge. She experiences pain and fatigue, struggles to stand or climb stairs, and dreams of getting stronger and going to college. For Sammy, a perfect day is something many of us take for granted: “I just want to be able to go to the bathroom by myself on a regular toilet.”

Every rare disease child's wish counts. To learn more about the 25 million children in America living with rare disease, visit www.25millionwishes.org 🎂

12/10/2025

Today’s One Wish Wednesday is for Morgan, who lives with HNRNPH2 NDD. Her birthday wish is for a chance to trial a treatment. This diagnosis has changed life for her, for her neurotypical brother, and for her parents. Every family in our community knows how much hope can be carried in a single wish. We are holding Morgan and her family close today. 💚

To learn more about our 25 Million Wishes campaign, visit www.25millionwishes.org 🎂

11/20/2025

One Wish Wednesday 🗣

Meet Tucker, a little boy who was diagnosed with a mutation on the SLC6A1 gene.

SLC6A1-related disorders are genetic conditions that affect how the brain sends calming signals. It often leads to seizures, developmental delays, and learning or behavior challenges.

While Tucker cannot speak to share his birthday wish, his family believes his wish would be to live his best life. They have an immense amount of hope for Tucker’s future, and love him more than words can express.

To learn more about Tucker and the 25 million children in the US living with a rare disease, visit www.25millionwishes.org today. 🎂

11/18/2025

Sign and share the petition today to support PDCD families. We’re asking the FDA to consider DCA — a treatment that many families report has helped stabilize their children — and to engage directly with the PDCD community to understand their experiences.

This isn’t about lowering scientific standards; it’s about applying the regulatory flexibility that rare diseases require and ensuring that meaningful patient outcomes are part of the decision-making process.

Sign the petition: https://c.org/DjZkjdwMcv
Hope for PDCD Foundation

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