Ronald McDonald House at Standford - "Provides a home-away-from-home and compassionate support for families with children with life-threatening illnesses receiving treatment at Lucile Packard Children's Hospital or Stanford Hospital and Clinics. "
The Beauty of Difference - Nice article about my friend Novelette (when she was 12) who has RDEB... and how society focuses on beauty.
Help Sought For Israeli with Skin Disease - "We hope someone out there who knows something about Acquired Epidermolysis Bullosa will get in touch with us ASAP, so that Dror Daniel's life can be saved."
Amy's Fund - A website to raise money for Amy, a young women with RDEB struggeling to live on her own. Note: The e-mail address on this site comes back unknown so I'm not sure if this site is still active or not.
~Organizations that support EB~
Nuskin - "In an effort to discover advancements in skin care that will benefit everyone, Nu Skin established the Nu Skin Center for Dermatologic Research at Stanford University School of Medicine, in 1998. This research and development center focuses on scientific investigation, dermatology research, patient care, training, product development and clinical trials.
Part of this scientific investigation is aimed at finding a cure of Epidermolysis Bullosa (EB), a debilitating and often fatal skin disease that primarily affects children. In 2001, Nu Skin and Stanford University School of Medicine were honored by the American Academy of Dermatology (AAD) for their combined efforts in generating awareness and supporting research for EB with the presentation of the AAD's prestigious Gold Triangle Award."
NORD - National Organization for Rare Disorders. Since 1983, working toward the prevention, treatment, and cure of rare "orphan" diseases.
Make A Wish Foundation - "We grant the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength, and joy."
Forever Young Foundation- Founded in 1993 by NFL Legend Steve Young. "Passing on hope and resources for the development, strength and education of children"
March of Dimes - "March of Dimes researchers, volunteers, educators, outreach workers and advocates work together to give all babies a fighting chance against the threats to their health: prematurity, birth defects, low birthweight. Genetic birth defects leave our children unable to walk, to hear, to think, or even to fight off disease. March of Dimes investments in genetic research already are starting to yield results."
~Helpful Products~
~Emu Oil Info:~
The following was taken from the G D & K Emu Farms website. Go there for more information!
"Australian Aborigines have been using emu oil forty thousand years to treat aching joints, skin ailments, and open wounds. It also appears to promote faster healing with less pain and scarring from burns and open wounds, as well as irritation and inflammation associated with most skin conditions."
Many EB patients use it including myself and it does seem to help a bit. I suggest atleast trying it! It is soothing and not greasy.
G D & K Emu Farms - E-mail or call and ask for Glen and tell him you have EB to recieve a discount!
Ross- Makers of Ensure varieties, Pediasure varieties (for children), and various other high calorie drinks for either oral or tube feedings.
Ensure- Website for Ensure, Ensure Plus, Ensure High Protein, Ensure High Calcium, Ensure Fiber, Ensure Pudding, Enlive, and more!
Usually Ensure Plus is recommended for EB patients because it has 360 calories and 13 g protein in each 8oz can. Ensure comes in many different flavors and can be used in recipes and smoothies. There are recipes available at the Ensure website.
Deliver 2.0 ( Each 8oz can contains 470 calories and 17.7 g protein, can be used for oral or tube feedings, comes in vanilla, often recommended for EB patients!)
They also make many products for infants and much more.
Boost - Website for Boost, Boost Plus, Boost Breeze, Boost High Protein, Boost Protein Powder, Boost with Fiber and Boost Pudding.
Usually Boost Plus is recommended for EB patients because it has 360 calories and 14 g protein in each 8oz can. Comes in various flavors and can be used in recipes and smoothies. There are recipes available at the Boost website.
"SCANDISHAKE® calorie-rich shake mix designed to assist patients who need to gain or maintain weight. Mixed with 8 ounces of whole milk, a single serving of SCANDISHAKE® contains approximately 600 calories!" It is available in vanilla, chocolate and strawberry and can also be used in recipes and mixed with other drinks. They offer a free Scandishake recipe book as well.
"SCANDICAL® Calorie Booster is a taste-free powder that quickly and easily adds 35 calories per tablespoon to your meals, without changing the taste of the foods you love."
"The Low Volume Nutritional Solution 320 calories and 40 Vitamins & Minerals in only 1.5 ounces" Comes in Caramel and Vanilla Flavors.
Nestle Clinical Nutrition - Makers of Carnation Instant Breakfast, Crucial (supplement to aid in wound healing), NuBasics varieties (including high calorie/protein soup), Nutren Varieties (for tube feeding), Peptamin varieties and more!
ADA- Information and technical assistance on the Americans with Disabilities Act
JAN- (Job Accomidation Network) A free consulting service that provides information about job accommodations, the Americans with Disabilities Act (ADA), and the
employability of people with disabilities.
The Father's Network- "Our mission is to celebrate and support fathers and families raising children with special health care needs and developmental disabilities."
Feeding Tubes ~ Jean Miller- A women who discusses the decision to have her daughter get a G-tube also talks about tube care etc. There are also many links on the side for more useful information on g-tubes and eating. It's a website about Huntingtons Disease which can be similar to EB as far as eating and diet is concerned.
~Puree/Soft/High Protein/High Calorie Recipe and Idea Pages~
Biometics- Makers of liquid vitamins. All of their vitamins are either liquid or powder that can be mixed with water or juice. This is good for EB patients who have esophageal problems and can not swallow or chew pills easily. I have taken these myself and they don't taste bad!
~Soy Products~
~Dysphagia/Swallowing Problems~
~Esophageal Procedures~
~Medical Supplies/Products~
~Independent Living Aids~
~Helpful Books~
MORE COMING SOON!
Direct Medical- a leading supplier of wound care products for patients with Epidermolysis Bullosa
Kendall - Tyco Healthcare- Makers of TELFA, KERLIX, VASELINE gauze, XEROFORM gauze, CONFORM stretch bandage, WEBRIL and more!
Smith & Nephew- Makers of Acticoat, EXU-DRY, Nursing Care, Triple Care and more!
Medline - Makers of Sof-Form conforming gauze bandage and more!
Fougera- Makers of Bacitracin Zinc ointment, Vitamin A&D ointment and more!
Jergens- Makers of Jergens Ultra Healing lotion, Jergens Ultra Healing Intense Moisture Therapy and more!
Softsoap- Makers of Softsoap Naturals Body Wash with Milk and Honey, Softsoap Naturals Bosy Wash with Pure Milk Proteins for sensitive skin, Antibacterial Liquid Hand Soap and more!
Aveeno- Website for Aveeno Oatmeal Bath (Daily Moisturizing Bath, Soothing Bath treatment) and more!
Pedors- "Pedors Shoes launched their E.B shoe program in February of 2000. The program was the result of a request by an adult E.B. patient, Andrea Olinger from N.C. She desired a children's version of our adult diabetic shoe for her daughter, Taylor. Since then, thanks to the help of DEBRA, parents with E.B. children have contacted us from around the world and we have been proud to help wherever we can. The Pedors E.B. program is the official company charity..."
Robeez - "Robeez Footwear is the industry leader in soft-soled leather footwear for newborns to four year olds."
Pediped - Quality, soft leather, stylish footware for infants.
Preschoolians - "Preschoolian shoes are the most flexible shoes in the world, offering barefoot flexibility yet still fit for outdoor use."
Infant Products:
SpecialNeeds™ Feeder (Haberman Feeder) - "In cases where babies have severe feeding problems, such as with Down Syndrome, cleft lip/palate, neurological disfunction, disorganized sucking symptoms and others, the SpecialNeeds Feeder offers analternative to spoons,enlarged and/or extra holes in the nipple, and nasogastric tubes..."
Fuzzi Bunz - Buttery soft micro fleece fabric stays dry against baby’s skin while super absorbent inserts retain liquid in a pocket within the diaper.
Huggies Supremes/Huggies Ultratrims
Soft Clothing:
Hanna Anderson - "Soft quality for kids and families, inspired by our Swedish heritage."
Kings and Sages - "Kings and Sages is an innovative line of finer quality apparel made from comfortable, long lasting 100% cotton fabrics."
Knee Pads:
Silipos - "Established in 1989, Silipos® Inc. is a leader in the field of skin protection and skin care. Our corporate slogan, Tomorrow's Technology for Today's Medical Challenges, expresses the company's commitment to our growing line of innovative Silipos® Gel products."
Kneetogs - "Kneetogs' exclusive Sentinal MicrocellTM is a patented, closed-cell foam that provides 50% more shock absorption than urethane foams used in other toddler knee pads. It absorbs almost no water, and is naturally hypo-allergenic and anti-bacterial. Kneetogs' stretchy lycra knit band and ultra-thin LastinTM elastic gently hug your child's legs without binding or irritation. No scratchy Velcro!"
Bathing:
Bath 'N Bumper Cushioned Bath Support - "Our Bath 'N Bumper is a tub in a tub that makes bathing your child so safe and easy. It is constructed of a soft open weave polyester fabric made especially for the bath. It's filled with polystyrene beads to give lots of cushion and support."
Sleeping:
Eggcrate
Satin/Silk Sheets
Shoes:
Sheepskin and Lambskin shoes and slippers
U.S. Sheepskin - "U.S Sheepskin Inc. is one of the largest and certainly the most diverse sheepskin products manufacturers in the United States and Canada."
Superlamb Sheepskin Footware - "We offer the hottest UGG boots, slippers, clogs and shoes as well as other quality sheepskin footwear brands. Sheepskin makes the most comfortable shoes!"
Slipper Factory - "We use only first grade Merino lambskin, rather than sheepskin, in all our handcrafted and washable products. Merino lambskin is renowned for its density, softness and outright durability and makes a great slipper."
Ambulatory Footware - "Makers of quality custom-made footwear and foot orthoses, specializing in design, fabrication and fit for your individual needs."
To submit your own site or a site you recommend that's not already listed on this page, please use the form below.
EB Organizations
National
DebRA of America - Dystrophic Epidermolysis Bullosa Research Association. "A voluntary, non-profit organization dedicated to finding a cure for Epidermolysis Bullosa (EB)"
EB Nurse - "When someone in your family has EB, you need help. This site contains up-to-date and practical information about EB and the treatment and care required to minimize the impact on the individual and family living with this disorder. You can find information and guidance on the many everyday
EB issues and challenges. This site is not only for families, but practitioners, too."
Epidermolysis Bullosa Medical Research Foundation (EBMRF) - "The EBMRF is a volunteer nonprofit foundation dedicated to the support of medical research of Epidermolysis Bullosa (EB), its causes, the development of successful treatments, and ultimately, its cure."
National Epidermolysis Bullosa Registry (NEBR) - "The overall goal of this project since its inception has been to precisely define all types and subtypes of EB, using state-of-the art epidemiological and laboratory techniques, as facilitated by the establishment of a nationally based rare disease registry."
Kisses for Katie - "Kisses for Katie Foundation is a Not-For-Profit, Tax-Exempt Organization under IRC Sect 501(c)3, whose purpose is to raise the necessary funds for EB patients care, and to educate the public on the genetic disorder Epidermolysis Bulosa or EB."
Epidermolysis Bullosa Action Network (EBAN) - The Epidermolysis Bullosa Action Network is an organization committed to accomplishing the following objective: To improve the financial quality and emotional stability of EB families.
Have a Heart for EB - "...A trip to Walt Disney World is one place where these children can be children, enjoying the magic of childhood. For the first time, many will be meeting other children who suffer from EB as they do. With some help, families come from far away to be able to join others who suffer from this painful, and often isolating disorder."
Noelle Hermes Foundation - "All donations will go into the Noelle Hermes Foundation, a non-profit organization. Funds will be used in two ways: for research, to help find a cure for EB; and to help alleviate the financial burden to numerous EB families who have specific medical needs that are not being met by their insurance."
Befriend EB - "befriend EB is a volunteer nonprofit organization dedicated to support the needs of those suffering from Epidermolysis Bullosa."
Wayne-Westland Friends of Epidermolysis Bullosa (WWFEB) - "OUR MISSION: To support the needs of families in the greater Wayne- Westland area who have EB (Epidermolysis Bullosa), to promote EB awareness and education, and to encourage those searching for a cure. When possible, help financially those families with EB to ease the burden of medical treatment and other needs. When practical, give physical support to those families with EB. Fund EB research to find a cure for the disease. Enhance EB awareness to our community. Bring families of EB together by maintaining a strong communications network."
click here to learn more about these summer camps (coming soon)
EB Support Groups
Please visit the Support page for listings of National and International EB organizations, support groups and contact information, e-mail support groups and EB message boards.
