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COMMUNITY

Resources

We are a non-profit organization focused on raising awareness, funding research, and supporting patients and their families. Our dedication and hard work is essential in improving the lives of those affected by this rare disease. We are proud to support these organizations and their important mission.

Non-Profit Organizations

National Organization for Rare Disorders (NORD)

Global Genes

A patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.

A global advocacy organization for rare disease patients and families, offering support and resources.

Equipment and Supplies

Bath Time

Vevor Tub Transer Bench

Leckey Advanced Seat

Otterbath

Available at adaptive mall

Fireflysplashy

Sunrisemedical, Ages 1-8

Car & Travel

Special Tomatoe MPS

Available in the USA only through adaptivemall; Car seat and airplane certified

Special Tomatoe out and about chair

90lb weight capacity

Eating

The high low chair

Special tomatoe high low

Abiie beyond high chair

Upseat for on the go

Available in retail stores

Sensory PT Tools

Rock and spin sensory wobble

Sensory pea pod

Fidget tubes

Textured stepping stones

Sensory spinners

Sensory spinning chair

Sitting

Cube chair

Kaye Corner chair

Leckey Pal Classroom chair

Skill builders seat to go

Small and medium available

Special Tomatoe

Adaptivemall.com; Ages 1- adult sizes available

Upseat

Available in retail stores

Sleeping

The Safety Sleeper

Up to $6K

Borna

Amazon $120

Cubby bed

$13K+

Bed rails

$$ - varied by the size of bed and how many sides you buy

Standing

Rifton Large supine stander

Rifton Mini mobile stander

Rifton Stander

size 1 & 2

Stroller & Wheelchair

Strive adaptive pediatric stroller

Convaid Trekker

Walking

Firefly Upsee

Leckey.com; Ages 1-8

Rifton walker

Nimbo walker

Sizes XS – XL; Ages 2- 18+

Kidwalk gait trainer

3 sizes; 65-95 lbs

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