Krystal Biotech can provide more information on DEB
Krystal Connect Community Education Liaisons help raise awareness of DEB and can help patients and their families learn more about DEB by:
Krystal Community Education Liaisons have nursing or genetic counseling backgrounds.
Contact a Community Education Liaison at 1‑844‑5‑KRYSTAL.
Order sample collection kit and fill out Test Requisition Form (TRF)
Through Decode DEBTM by:
OR
Collect sample
Send sample and completed TRF to GeneDx
Receive results
The Decode DEBTM program was created to provide access to genetic testing for patients who have been diagnosed with or suspected of having epidermolysis bullosa (EB) and have not had genetic testing. Decode DEB is open to all US residents, including residents of Puerto Rico. Testing is available to eligible patients free of charge. No patients, healthcare professionals, or payers, including government payers, are billed for this program. Krystal Biotech does not receive any data that can identify individual patients. Krystal Biotech covers the cost of laboratory testing only—excludes office visits, copays, sample collection, and any other related costs. Krystal reserves the right to amend, suspend, or terminate this program without notice.
Information for patients about DEB and its risks, plus how to get an accurate diagnosis and manage the disease.
There are a number of organizations that provide support to individuals and families living with DEB. Here are some that might be a fit for your patients:
DEB is a serious genetic disorder caused by mutations in the COL7A1 gene1,2
References: 1. Fortuna G, Aria M, Cepeda-Valdes R, Trevino MGM, Salas-Alanís JC. Pain in patients with dystrophic epidermolysis bullosa: association with anxiety and depression. Psychiatry Investig. 2017;14(6):746-753. doi:10.4306/pi.2017.14.6.746 2. Eichstadt S, Tang JY, Solis DC, et al. From clinical phenotype to genotypic modelling: incidence and prevalence of recessive dystrophic epidermolysis bullosa (RDEB). Clin Cosmet Investig Dermatol. 2019;12:933-942. doi:10.2147/CCID.S232547 3. Has C, Liu L, Bolling MC, et al. Clinical practice guidelines for laboratory diagnosis of epidermolysis bullosa. Br J Dermatol. 2020;182(3):574-592. doi:10.1111/bjd.18128 4. Kao C-H, Chen S-J, Hwang B, Yang A-H, Hsu C-Y, Huang C-H. Junctional epidermolysis bullosa. J Chin Med Assoc. 2006;69(10):503-506. doi:10.1016/S1726-4901(09)70318-1 5. Tabor A, Pergolizzi JV Jr, Marti G, Harmon J, Cohen B, Lequang JA. Raising awareness among healthcare providers about epidermolysis bullosa and advancing toward a cure. J Clin Aesthet Dermatol. 2017;10(5):36-48. 6. Bruckner AL, Losow M, Wisk J, et al. The challenges of living with and managing epidermolysis bullosa: insights from patients and caregivers. Orphanet J Rare Dis. 2020;15(1):1. doi:10.1186/s13023-019-1279-y