Resource
The anchor question: who handles the parts of the plan that aren't a visit or a test: the diet, the medication list, the paperwork, the community? Dietitians, pharmacists, navigators, social workers and independent patient organizations all show up in the care maps. This roster keeps them findable and keeps their independence visible.
What the care maps need
| Resource | Serves | What the care maps ask for |
|---|---|---|
| Registered dietitian for GI symptoms and restrictive diets | Connective tissue, nonspecific symptoms, transthyretin amyloidosis | Elimination and gastroparesis diets delivered with nutritional counseling, to avoid the pitfalls of restrictive eating.1 The nonspecific symptoms map adds the restrictive diets patients arrive with; the ATTR map adds GI involvement and weight loss. |
| Metabolic dietitian | Inherited metabolic disease, neurogenetic | From the first visit for PKU, urea cycle disorders and homocystinuria, as the inherited metabolic map asks. In PKU, treatment is lifelong, aims for blood phenylalanine of 120 to 360 µmol/L, and rests mostly on diet and low-phenylalanine medical foods.2 The neurogenetic map adds metabolic diets and dysphagia. |
| Dietitian for lipid and metabolic findings | Comprehensive genetic risk | Diet for FH and other metabolic findings, as the comprehensive genetic risk map calls for. |
| Clinical pharmacist | Pharmacogenomic profile, nonspecific symptoms, connective tissue | Applies the CPIC gene-drug guidelines to the current medication list and to future prescriptions.3 Reconciles the polypharmacy that builds up over a long search, and reviews opioid and NSAID use in hypermobility, both from the maps. |
| Care navigator or patient advocate | Transthyretin amyloidosis, lysosomal storage disorders, management and surveillance, progressive monogenic disease | Helps the anchor with the infusion and specialty pharmacy arrangements and the cash-price or coverage conversation, which the ATTR and lysosomal maps treat as anchor work. Transition support for patients arriving from pediatric care, which the management and surveillance map calls for. |
| Social work | Progressive monogenic disease, hypophosphatasia, neurogenetic | Disability, employment and home-modification resources in the progressive monogenic map; social work support as needed in hypophosphatasia; caregiver support alongside the anchor. |
| Independent patient organizations and registries | Every care map's Community row | Most patient organizations work with modest industry support, and a minority depend on it: in a national survey, 67.3% received industry funding, 11.9% received more than half of their funding from industry, and 7.7% of leaders felt pressure to align positions with corporate donors.4 The roster records each organization's funding disclosure so the anchor can choose with that in view. |
Vetting criteria
Every entry is checked against these before listing and reviewed yearly.
- Dietitians hold the registered dietitian credential; pharmacists and social workers hold an active license where they practice.
- Clinician entries meet the independent practice test: founded or co-founded the practice, with more than half of its revenue from patients rather than payers.
- Navigators and advocates say who pays them. A navigator funded by a manufacturer can be listed, marked as such.
- Patient organizations publish their funding sources and a conflict-of-interest policy, and have clinicians review their clinical content.
- Publishes prices for paid services, and writes back to the anchor.
How the roster is built
- Year one: a registered dietitian experienced with GI symptoms and restrictive eating, a metabolic dietitian, a clinical pharmacist who reads pharmacogenomic results, and the patient organizations the current care maps already point patients to.
- Year two: navigators, patient advocates and social workers; organizations for the newer maps, each with its funding disclosure on the entry.
- Year three: re-check disclosures, track whether the anchor heard back, and ask anchors which resources patients actually used. Prune and add.
Roster
No entries yet. The convener drafted this roster and it's looking for a member to lead it. Members propose people and organizations 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 person or organization, the role, the credential or funding disclosure, the services they cover from the table above, the price where there is one, how to reach them, and the member who vouched for them.
References
- 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
- Vockley J, Andersson HC, Antshel KM, et al. Phenylalanine hydroxylase deficiency: diagnosis and management guideline. Genet Med. 2014;16(2):188-200. doi:10.1038/gim.2013.157
- Relling MV, Klein TE. CPIC: Clinical Pharmacogenetics Implementation Consortium of the Pharmacogenomics Research Network. Clin Pharmacol Ther. 2011;89(3):464-467. doi:10.1038/clpt.2010.279
- Rose SL, Highland J, Karafa MT, Joffe S. Patient advocacy organizations, industry funding, and conflicts of interest. JAMA Intern Med. 2017;177(3):344-350. doi:10.1001/jamainternmed.2016.8443
References retrieved from PubMed on 2026-10-30. Rosters are reviewed at each yearly cycle.
Colorado Care Network. Resource. Version 2026-10-30.