DEBRA Programs

 

Patient Member Travel Application Fund

The DEBRA Canada Patient Member Travel Application form is designed for those in need of assistance for travel (and travel related) expenses. Click here to download the PDF form.

 

EB Patient Care Kit

DEBRA Canada’s EB Patient Care Kit provides a comforting support package for newborns and their families as they begin to care for a child with EB. Families receive practical, hands-on information on wound care, medical supplies, provincial healthcare service options, and information related to the care of infants with EB. This program also provides the family with specially-made clothing and basic medical products. The EB Patient Care Kit may be provided to others, not only infants.

Medical Assistance Fund

DEBRA Canada knows that we all want to give our loved ones the very best of care. The costs associated with Epidermolysis Bullosa can be challenging at times, and the health insurance in our provinces and territories does not necessarily cover all of these expenses. One of the ways that DEBRA Canada supports Canadian families living with EB is through our MEDICAL ASSISTANCE FUND. The purpose of this Fund is to provide financial assistance to those affected by this devastating disease.

The Fund is available to assist with medical and related expenses that are not covered by other health assistance plans at any level of government. The Medical Assistance Fund Committee considers each request on an individual, case-by-case basis. Since the Fund’s inception in 2003, many families have been helped. It includes help with a co-pay or deductible, purchase medical supplies or comfort aids, or allow for increased independence. The request must serve a beneficial medical purpose for the recipient and/or improve the quality of life. In most cases, the payee should be the vendor or supplier; in special cases, DEBRA Canada may agree to reimburse, as long as the receipt is provided. This program is ONLY for persons with EB, who are members of DEBRA Canada.

All requests should be sent to:

DEBRA Canada, ATTN: Medical Assistance Fund Committee

1500 Upper Middle Rd, Unit #3

PO Box 76035
Oakville, ON L6M 3H5 Or by email to Erin Hoyos our Secretary at ehoyos@debracanada.org

* Please note, all recipients of Medical Assistance Program funds should be prepared to provide a photo or a statement about the benefit of receiving funds from DEBRA Canada, to illustrate the positive impact of assistance through this program. We ask that this be received within one (1) month of receiving funds.

EB Fellowship Program - EB Advice

We are pleased to announce EB Advice, a new initiative of DEBRA Canada and the Dermatology Department of The Hospital for Sick Children (SickKids) to help support patients and families affected by EB throughout Canada. SickKids’ EB clinic was founded in 2004 and currently follows over 100 patients with different types of EB. Unfortunately not all EB families have access to EB specialists. We aim to fill this gap by building partnerships with primary health providers to ensure EB patients receive support and guidance in their care via a newly developed email help line.

How we can help:

  • We check EB.advice@sickkids.ca on a weekly basis to receive medical questions from health care providers, as well as EB patients, families seeking for advice regarding this condition.
  • While we cannot provide direct medical advice to families, with consent we will work with a patient’s health care provider, providing medical advice to them and helping them access the information needed.
  • If patients are having an medical emergency they should access local care. This email account is not a substitute for timely medical attention.

We are not able to:

  • Provide direct medical care to patients’ inquiries
  • Provide prescriptions for medications
  • Be responsible for patients’ direct health care

Process:

  • Please fill out the PDF form with all applicable fields/information filled in, and hit/"submit". Your form will automatically be emailed to EB.advice@sickkids.ca
  • If a health care provider reaches out directly regarding a patient, we will ensure consent is in place before answering specific questions
  • We commit to answering all emails within a week
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