Proclamation

INTERNATIONAL EPIDERMOLYSIS BULLOSA AWARENESS WEEK

SAMPLE PROCLAMATION

A RESOLUTION

Supporting the goals and ideals of an International Epidermolysis Bullosa Awareness Week to raise public awareness and understanding of Epidermolysis Bullosa, recognizing the need for a cure for the disease, and encouraging the people of [region] and interested groups to support the week.

WHEREAS, Epidermolysis Bullosa is a group of debilitating genetic diseases characterized by the presence of extremely fragile skin that results in the development of recurrent, painful blisters, open sores, and, in more severe forms of the disease, major complications including disabling musculoskeletal deformities, disfiguring scars, internal blistering, malnutrition, dehydration and early mortality risk.  Any subtype can be complicated by infection, sepsis and death, and there is presently no cure for the disease; and

WHEREAS, the skin is so fragile for individuals with the disease that even minor rubbing and day-to-day activity may cause blistering, including activities such as writing, eating, walking, and minor chafing from the seams on clothing; and

WHEREAS, most individuals have inherited the disease through genes they receive from one or both parents, causing a breakdown of the anchors between layers of the skin; and

WHEREAS, individuals with Epidermolysis Bullosa often feel isolated because of the their loss of autonomy, by the lack of knowledge about the disease and the impact that it has on the body, and the presumption by members of the public that it is contagious because of its appearance; and

WHEREAS, statistics collected from Epidermolysis Bullosa registries suggest that several hundred thousand people internationally are impacted by this disease, which affects both genders equally and occurs in every racial and ethnic group throughout the world; and

WHEREAS, approximately 90 percent of individuals with the disease report that they experience significant pain on an average day.  All forms of Epidermolysis Bullosa require good nursing and support care, and severe forms require intensive nursing care similar to that given to severe burn patients; and

WHEREAS, Epidermolysis Bullosa is a life-long disease and there is a deep, unmet need worldwide to educate and support individuals and families affected by Epidermolysis Bullosa.  The disease impacts every aspect of the person affected, and is traumatizing for the patient’s entire family; and

WHEREAS, many health care practitioners worldwide are unaware of the disease and may not know how to gain access to testing and analysis facilities, causing people with it to suffer needlessly without so much as an accurate diagnosis; and

WHEREAS, in many regions, patient information is scarce or nonexistent, and caregivers encounter enormous difficulties in finding adequate treatment.  They lack wound care supplies considered essential in order to prevent infection, and equity in access to informed healthcare, even the most basic care and treatment.  Forums exist whereby global healthcare providers can educate themselves about the disease, but they are little-known; and

WHEREAS, patients often lack funding support for surgical procedures to “free” fingers and toes that have become disabled by repeated scarring, and may not have access to the use of composite or cultured skin cell technology to optimize the function of hands and feet; and

WHEREAS, in the most progressive regions, there is often no continuity of care beyond childhood.  Most well-informed multidisciplinary healthcare teams are located in children’s hospitals, thus care is withdrawn when a young patient survives to the age of majority; and

WHEREAS, medical research efforts into Epidermolysis Bullosa and the discovery of effective treatments for patients are under-funded in comparison with other diseases because of its status as a rare or “orphan” disease; and

WHEREAS, people with the disease endure a profound psychosocial burden, as the affliction is aggravated by emotional despair, a lack of therapeutic hope, and the deficiency of practical supports for everyday life; and

WHEREAS, some symptoms encountered by a person with the disease can be improved with the support of parents, family members, caregivers, friends, educators, health and medical practitioners and persons in the community at large who are well-informed about the disease; and

WHEREAS, progress has been made in the development of specific molecular therapies, including protein and gene therapy, but in order to find treatments and eventually a cure for the disease, more research must be done to maintain progress beyond pre-clinical and early clinical trials; and

WHEREAS, the [body making proclamation] desires to encourage both public and private investment in research and development into treatments and a possible cure for the disease by raising awareness in [region] about the disease, and organizations supporting people with it; and

WHEREAS, the last week of October would be an appropriate time to recognize International Epidermolysis Bullosa Week in order to raise public awareness about the prevalence of this disease, the impact it has on families, and the need for additional research into a cure for the disease.

NOW, THEREFORE, BE IT RESOLVED BY [body or individual making proclamation] to join with Epidermolysis Bullosa organizations around the globe in calling for increases in public and private sector funding for medical research on this disease, targeted education programs for health professionals, patients and the public, and worldwide recognition of Epidermolysis Bullosa as a significant public health priority.  Throughout [region], in each and every year beginning in 2009, the last week of October shall be known as “International Epidermolysis Bullosa Awareness Week.”  We ask our citizens and constituents to:

  1. Support the essential goals and ideals of increasing public awareness and understanding of Epidermolysis Bullosa as a public health priority;
  2. Recognize the need for a cure for the disease; and
  3. Encourage the people of [region] and interested groups to support the week through appropriate ceremonies and activities to promote public awareness of Epidermolysis Bullosa and to foster understanding of the impact of the disease on patients and their families.

 

PROCLAIMED THIS DAY, [day of proclamation]

[INSERT NAME OF BODY OR INDIVIDUAL MAKING PROCLAMATION]