Resources and support for Dystrophic Epidermolyis Bullosa (DEB)
Krystal Biotech can provide more information on DEB
Connect with us
Sign up to connect with Krystal Biotech for more information about DEB or call us at 1-844-5-KRYSTAL.Your patients can get personalized support through Krystal Connect by calling 1‑844‑5‑KRYSTAL
Krystal Connect Community Education Liaisons help raise awareness of DEB and can help patients and their families learn more about DEB by:
- Providing educational opportunities via one-on-one, family, or group meetings
- Providing education about family trees, genetic inheritance, and genetic testing for patients or family members
- Connecting patients with helpful tools and resources about DEB
- Providing information about no-charge genetic testing with the Decode DEBTM program
Krystal Community Education Liaisons have nursing or genetic counseling backgrounds.
Contact a Community Education Liaison at 1‑844‑5‑KRYSTAL.
An accurate DEB diagnosis through genetic testing can enable proactive care
Decode DEBTM provides simple no-charge genetic testing to eligible patients through GeneDx.
The Decode DEBTM program can shorten the time to diagnosis for DEB patients and empower informed healthcare decisions to facilitate the delivery of proactive care.
Patients are eligible if they meet all 3 criteria:
- Have symptoms consistent with epidermolysis bullosa
- Have not had previous genetic testing for epidermolysis bullosa
- Are residents of the United States or Puerto Rico
How Decode DEBTM* works
Order sample collection kit and fill out Test Requisition Form (TRF)
Through Decode DEBTM by:
- Phone: (888) 729-1206
- Email: [email protected]
OR
Collect sample
- Collect a blood or buccal sample
- Label samples as directed
Send sample and completed TRF to GeneDx
- Send sample and completed TRF to GeneDx (prepaid shipping label will be in kit)
- TRF and sample do not have to be submitted together
- TRF can also be submitted electronically to [email protected]
- To avoid delays, ensure TRF is fully completed
Receive results
- Lab will email or fax results to ordering clinician within 4 weeks of receiving the sample and fully completed TRF
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.
Patient Brochure
Information for patients about DEB and its risks, plus how to get an accurate diagnosis and manage the disease.
Support and advocacy
Patient advocacy and organizations
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:
Understanding DEB
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