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DebRA of America - Dystrophic Epidermolysis Bullosa Research Association
DebRA of America was established more than 25 years ago to provide programs and services to people with Epidermolysis Bullosa and their families and to support EB research. DebRA is the only national EB organization that both funds research and provides programs and services to the EB community.
Today, DebRA’s programs reach more than 10,000 families across the United States. From the time a baby is born with EB, DebRA provides professional and peer support to the parents through the EB Hotline staffed by two Nurse Educators and the New Family Advocate Program, respectively. Health professionals treating the infant also consult the Nurse Educators on the specific techniques and products needed to care for the infant with EB.
DebRA also provides emergency assistance for medical needs through its Family Crisis Fund and Wound Care Clearinghouse. Its free biennial Patient Care Conference enables families to have direct access to EB experts and to gather for mutual support. The new EB En Español program enables Spanish-speaking families access to a Spanish-speaking Nurse Educator and to information in their own language.
DebRA provides accurate and up-to-date information through this web site and its quarterly “Currents” Newsletter and a variety of print materials.
In its mission to find effective treatments and a cure for EB, DebRA supports an international peer review research grants program that funds the most promising projects exploring the causes and consequences of and treatments for EB.
When you support DebRA you are supporting a financially responsible organization that devotes 87 cents of every dollar it raises to programs, services and research.
DebRA of America is a 501c3 non-profit organization, which means your donation is tax deductible to the full extent of the law.
Make a Secure Online Donation: Donations also can be made in honor or memory using this link.
Donate by Mail: Make your check payable to DebRA of America and mail to
DebRA of America
5 West 36th Street, Room 404,
New York, NY 10018.
Workplace Giving Campaigns: If your employer participates in America’s Charities – Health First/CFC please designate DebRA as your charity of choice using the code 9518.
Matching Gifts: Many employers offer a dollar-for-dollar matching gift or a percentage match when you give to your favorite charity. Contact your human resources representative for more information.
Gifts of Securities: If you plan to make a gift of stock, please contact DebRA at 212-868-1573 for the necessary information.
Online Store: Purchasing DebRA EB Awareness gear helps educate about EB while supporting the organization’s mission. To browse the store click here.
Please visit the DebRA website for more information
EBMRF - Epidermolysis Bullosa Medical Research Foundation
The following information is from the EBMRF website:
We are truly in a race against time for the lives of many EB children. The more we raise, the faster the research, the more lives we save. Your gift will bring us another step closer to the miracle of healthy lives for EB children.
The EBMRF is unique in that we pay no salaries. All work, including executive, legal, accounting, development and administrative, is done on a volunteer basis. Because we have other sources to cover our minimal operating costs, 100% of all funds received through the Internet will be directed to the research program.
On behalf of all who suffer from this devastating disease, we sincerely thank you for your generosity.
Make a Secure Online Donation: To donate to the EBMRF please click here.
NuSkin: A donation of $.25 from each sale of three products from the NuSkin Epoch line: Firewalker, IceDancer and Glacial Marine Mud, will be donated to the EBMRF.
To purchase these products and make a difference for EB patients, visit www.nuskin.com.
Coco Eyeshadow: Designed exclusively by Courteney Cox-Arquette for Cargo Cosmetics
100% of sales will be donated to EBMRF. Available now at Sephora stores and Sephora.com for $28
Volunteer: The EB Medical Research Foundation is always in need of hard working volunteers. If you would like to get involved helping out the children affected by EB please contact the EBMRF. Thank you for your service."
Jamie Gibson-Hartley's CDs: Jamie Hartley was born with Recessive Dystrophic Epidermolysis Bullosa. She not only has an incredibly beautiful angelic voice but she is a strong, kind, wonderful friend and role model. To purchase her CDs, please visit her website. All proceeds from CD sales go to the EBMRF.
Please visit the EBMRF website for more information.
EBAN - Epidermolysis Bullosa Action Network
The following information is from the EBAN website:
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.
Make a Secure Online Donation: To donate to EBAN please click here.
Magazine Store: EBAN has just kicked off its fundraising campaign and this year, we've found a new way to raise money. It's fast and easy for you to help support our cause! When you buy, renew or extend your favorite magazine subscriptions on our online store, 40% of each purchase goes back to our cause! Over 650 magazine titles at up to 85% off the newsstand prices. Buy online 24 hours a day, 7 days a week. Click here to go to our online magazine store and help support our cause!
iGive: Like to help EBAN in a big way? Buy something for yourself. Better yet, buy a lot of something’s for yourself! But first join www.iGive.com/eban. Because whenever you purchase everyday items at the Mall at iGive, up to 26% of every purchase is donated to EBAN, at no cost to you! Wait, there’s more. At iGive.com you get free membership … access to the over 600 brand-name merchants like Barnes & Noble, Eddie Bauer, Target, Lands’ End and PETsMART… super savings and deals every day … and of course, free donations to EBAN! Join www.iGive.com/eban, and then shop till you drop. We’ll appreciate it!
OneCause: Every time you shop on-line year-round you can help EBAN at the same time!! How? Just enter the One-Cause on-line shopping mall through EBAN's website: Click HERE to enter. For every purchase you make, EBAN receives a referral commission. It’s that easy!
MERCHANTS INCLUDE:
1-800-flowers.com, Barnes and Noble, CircuitCity, Dell Computer, Eddie Bauer, Gap.com, Gateway Computer, Harry and David, HSN, KB Toys, L.L. Bean, Land’s End, Office Max, Old Navy, Omaha Steaks, PetSmart.com, Sears, Sharper Image, Staples, Target, Travelocity, VitaminShoppe.com…
and HUNDREDS MORE!!
What is “OneCause”?
OneCause makes it very simple for an organization to participate in Affiliate Marketing. OneCause has established a relationship with over 300 of the top Internet FAMILY-FRIENDLY merchants. Merchants have agreed to pay a commission each time a purchaser is referred to their online store. OneCause sets up a “shopping mall” for the organization, tracks the purchases and directs the commissions back to the referring organization. Simply visit the OneCause mall created for EBAN, select a merchant and make your on-line purchase as usual.
GoodSearch.com: Use GoodSearch to Benefit EBAN! EBAN is one of the charities participating in GoodSearch, a new Internet search engine that donates half of the advertising revenue it earns to charity. Each time you use GoodSearch and designate EBAN as your charity of choice, GoodSearch will donate a portion of the advertising revenue earned from the search to EBAN. It’s easy to use. Just go to the GoodSearch homepage www.goodsearch.com and specify EBAN as your designated charity, click verify and scroll through the list of charities to select EBAN. After the first time, each time you return to the home page, EBAN will appear as your designated charity. There is even a button you can click to see the number of searches and the amount raised. Add GoodSearch to your bookmarks or make it your homepage to make it easier to use. You may even download the nifty toolbar. Also, spread the word to your family and friends to help generate more contributions. GoodSearch estimates each search will raise $0.01 for your designated charity. 100 supporters searching twice a day could generate $730 a year, 1000 supporters - $7,300, and 10,000 supporters searching twice a day could generate $73,000! With your help, GoodSearch can generate donations, at no cost to you that will help EB families!
Please visit the EBAN website for more information.
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.
You can participate in a variety of ways:
Make a Secure Online Donation: To make a tax deductible online credit card donation click here.
Donate By Mail:
The Noelle Hermes Foundation
3720 Campus Drive, Suite 200
Newport Beach, CA 92660
Amazing Race: Sponsor or Participate in Noelle Hermes' Amazing Race for EB
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 Bullosa or EB.
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.
The Family Matching Program: Considering the price of bandages alone can surpass $50,000 a year, for many families the cost of a trip to Walt Disney World is prohibitive. It is our hope that everyone will be able to find a way. In light of this, we will be matching benefactors to families in need. For some families, help with airfare may be needed. For others, assistance with the hotel expense is all they need in order to afford this dream.
If you would like to financially assist a family to enable them to make this dream come true, just contact us. We will match your gift to a family or person who is presently unable to attend. It is our hope to serve those who have never attended before, so that they do not have to use their one and only 'Make A Wish' on this event.
Donate Your Air Miles: If you have extra air miles, you can pass them on to someone in need.
Specific Items: Specific items are needed to place in the goodie bags. These bags will be delivered upon arrival Thursday night. The purpose of this gift is to welcome families by providing some basic food items and special goodies.
Your Time: If you would like to lend a helping hand your help would be greatly welcomed. Extra hands are needed for assembling the goodies bags, helping with registration, and assisting with acquiring wheelchairs.
Financial Donations: Financial contributions are always welcome. All contributions will go towards making this special weekend possible.
American Academy of Dermatology and Camp Discovery
Make a Secure Online Donation: To donate to Camp Discovery please click here.
Greeting Cards: The American Academy of Dermatology (Academy) is expanding its Greeting Card program which benefits Camp Discovery. In addition to the custom-printed retail cards, the Academy now offers hand-drawn cards created by campers. All profits from the sale of these cards will go directly to the Camp Discovery Endowment Fund to send children, like these artists, to the Academy’s Camp Discovery program. The back panel of all cards will tastefully acknowledge your commitment with an imprinted statement that reads, "Proceeds from the sale of this card benefit Camp Discovery, the American Academy of Dermatology’s camp for children with severe skin conditions."
To help support Camp Discovery, click here for more information on the AAD Greeting Card Program with all proceeds going to Camp Discovery.
Children's Skin Disease Foundation and Camp Wonder
The following information is from the CSDF website:
Children's Skin Disease Foundation (CSDF) is a 501(c)3 non-profit corporation which focuses on the unique problems of young people who suffer from skin disease and the families who care for them. CSDF sponsors the only medically staffed camps in the western United States, the Carolinas and Virginia for children with severe chronic and/or fatal skin diseases. In 2001, CSDF established Camp Wonder, at Camp Arroyo in Livermore, California (33 miles south east of Oakland Airport) through a grant from the Taylor Family Foundation.
15 Ways You Can Help:
Donate your frequent flyer air miles to CSDF so campers have transportation to Camp Wonder
Donate your car. Call 800-320-0476 and say you are donating to Children's Skin Disease Foundation.
Donate goods or services for Camp Wonder or for our fundraising events
Make a corporate or foundation grant
Delegate CSDF to receive your United Way contribution
Recommend Camp Wonder as your company's focus for the year
Make CSDF or Camp Wonder a business, organization or school project
Hold a fundraiser at your home, school, company, or civic organization
Volunteer (web site, publishing, doctor or nurse at camp, etc.)
Assist with CSDF fundraising events or distribute CSDF event information
Encourage a pharmaceutical or skin care company to support CSDF and Camp Wonder
Give through a bequest in your will
Honor a loved one with a memorial gift
Every contribution is appreciated. No donation is too small!
Please visit the CSDF website for more information.
