Therapists
The anchor question: which physical, occupational, speech and pelvic floor therapists know the condition, will run the program the care map describes, and send the anchor a measured result? Every care map has a Therapies row, and each one names a specific program: joint protection before load in hypermobility, recumbent work before upright in dysautonomia, balance training in ataxia.
What the care maps need
| Therapy | Serves | What the care maps ask for |
|---|---|---|
| Physical therapy for hypermobility | Connective tissue | Joint protection and graded strengthening from a therapist who treats hypermobility routinely. Physical therapy is central to managing hEDS and HSD, and as of 2017, many physical therapists weren't familiar with the criteria and presentation. The trial evidence is limited in size and quality, and the guideline frames outcomes by function and participation.1 |
| Physical therapy for dysautonomia and deconditioning | Nonspecific symptoms, connective tissue | A progressive program that starts with recumbent aerobic work and leg resistance training and moves to upright exercise. The NIH consensus puts exercise training in every POTS treatment plan.2 |
| Neurologic and neuromuscular physical therapy | Neurogenetic, transthyretin amyloidosis, progressive monogenic disease, lysosomal storage disorders, hypophosphatasia, inherited metabolic disease | Gait, balance and falls work for ataxia and neuropathy; strength, endurance and gait baselines in Pompe disease and alpha-mannosidosis; ankle-foot orthoses, mobility aids and home safety in progressive monogenic disease; neurologic Wilson disease and HFE arthropathy in the inherited metabolic map; an equipment review each cycle. In Friedreich ataxia the guidelines call for challenging balance exercise in every therapy program, ankle and foot strengthening with stretching in ambulant patients, and physiotherapy as the first option for spasticity.3 |
| Occupational therapy | Connective tissue, nonspecific symptoms, transthyretin amyloidosis, neurogenetic, progressive monogenic disease, hypophosphatasia, inherited metabolic disease | Hand and daily function in hypermobility; pacing and energy management in the nonspecific symptoms map; hand function after carpal tunnel release in ATTR; equipment and home safety in neurogenetic and progressive monogenic disease; evaluation as needed in hypophosphatasia; neurologic Wilson disease. |
| Speech-language pathology | Neurogenetic, progressive monogenic disease, inherited metabolic disease | Dysarthria and dysphagia. For dysarthria in Friedreich ataxia, the guidelines suggest targeted, intensive behavioral therapy.3 Swallowing work coordinated with the dietitian on the resource roster. |
| Pelvic floor therapy | Connective tissue, hereditary cancer risk | Pelvic floor dysfunction, especially rectal hyposensitivity, is common in hEDS and HSD.4 For urinary incontinence, pelvic floor muscle training produced patient-reported cure of stress incontinence in 56% of women against 6% with no or inactive treatment.5 The hereditary cancer map adds pelvic floor therapy after surgery. |
| Lymphedema therapy | Hereditary cancer risk | After surgery, as the hereditary cancer map calls for. |
| Cardiac rehabilitation and exercise prescription | Transthyretin amyloidosis, comprehensive genetic risk | Cardiac rehabilitation where tolerated in ATTR; an exercise prescription adjusted for any cardiac finding in comprehensive genetic risk. |
Vetting criteria
Every entry is checked against these before listing and reviewed yearly.
- Founded or co-founded the practice, and more than half of its revenue comes from patients rather than payers. Cash and hybrid practices qualify.
- Holds an active license where the patient is seen.
- Treats the condition routinely, and says which of the programs above they run. Specialist board certification in the relevant area is welcome, not required.
- Measures function at baseline and at each cycle with a named instrument, and sends the result to the anchor.
- Publishes a cash price per visit and per package, and gives the patient a written home program.
How the roster is built
- Year one: Colorado physical therapists who treat hypermobility and dysautonomia routinely come first, since the connective tissue and nonspecific symptoms maps need them now. One pelvic floor therapist, and one speech-language pathologist with neuromuscular experience.
- Year two: occupational therapy, lymphedema therapy, and neurologic physical therapy for ataxia and neuropathy; therapists in the other states where members practice. One agreed outcome measure per care map.
- Year three: track whether measured function changed and whether the report reached the anchor. Prune and add.
Roster
No entries yet. The convener drafted this roster and it's looking for a member to lead it. Members propose therapists in the cohort channel; the convener and one member check the criteria before listing, and nobody is listed without their consent. Each entry will show the therapist, practice, discipline, the programs they run from the table above, cash price, telehealth availability, states licensed, and the member who vouched for them.
References
- Engelbert RH, Juul-Kristensen B, Pacey V, et al. The evidence-based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers Danlos syndrome. Am J Med Genet C Semin Med Genet. 2017;175(1):158-167. doi:10.1002/ajmg.c.31545
- Vernino S, Bourne KM, Stiles LE, et al. Postural orthostatic tachycardia syndrome (POTS): state of the science and clinical care from a 2019 National Institutes of Health expert consensus meeting, part 1. Auton Neurosci. 2021;235:102828. doi:10.1016/j.autneu.2021.102828
- Corben LA, Collins V, Milne S, et al. Clinical management guidelines for Friedreich ataxia: best practice in rare diseases. Orphanet J Rare Dis. 2022;17(1):415. doi:10.1186/s13023-022-02568-3
- Aziz Q, Harris LA, Goodman BP, Simrén M, Shin A. AGA clinical practice update on GI manifestations and autonomic or immune dysfunction in hypermobile Ehlers-Danlos syndrome: expert review. Clin Gastroenterol Hepatol. 2025;23(8):1291-1302. doi:10.1016/j.cgh.2025.02.015
- Dumoulin C, Cacciari LP, Hay-Smith EJC. Pelvic floor muscle training versus no treatment, or inactive control treatments, for urinary incontinence in women. Cochrane Database Syst Rev. 2018;10(10):CD005654. doi:10.1002/14651858.CD005654.pub4
References retrieved from PubMed on 2026-10-30. Rosters are reviewed at each yearly cycle.
Colorado Care Network. Therapists. Version 2026-10-30.