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Links 

Please help me keep this website useful. If you find any dead links, if any links have a new URL that needs to be changed, or new sites that should be added to this list, please contact me!! Thank you!!

To suggest a link, fill out this simple form! I will add it just as soon as I can

Caring For EB patients Related Links...

Support Links

• Global dEBra Organizations

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• Our-Kids Devoted to Raising Special Kids with Special Needs
  
  

• M.U.M.S. Mothers United for Moral Support  Linking parents of children with special health care needs and/or rare disorders.

• ADA - American with Disabilities ACT

• Tell Us Your Story Disability Discussion Forum

• Job Accommodation Network

• Our Special Needs Angels-parenting support

• Special Child information website

• Exceptional Parent Magazine

• Parents helping parents

• National Fathers Network Their mission is to celebrate and support fathers and families raising children with special health care needs and disabilities.

• Parenting Special Needs @ About.com Numerous articles and issues discussed.

• Federation for Children with Special Needs

• Fathering network Information on fathering in general and also about fathering a child with special needs. This site is made by Bringham Young University

• http://www.respitelocator.org/

• Kisses for Katie

• Group for those suffering from EBA

 Medical and helpful Links

• G-Tube Information
  

• Children Circle of Inclusion-Educational Resources for Children

• Smith & Nephew

• Coloplast Skin Care Products

• Article on the role of the different types of collagen in the body's development

• Medical Alert Bracelets this company has medical bracelets for kids and also some with butterflies! Thanks Tricia for this link!

• Medline Drug Information

• Wound Care Information Network Thanks Tricia for this link!

• Dermatlas

• View Point Mobility manufacture the "VISION" rear entrance lowered floor wheelchair minivan conversion.

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 Summer Camps

Camp Discovery
Every year, the American Academy of Dermatology sponsors Camp Discovery -- a summer camp in Crosslake, MN, for young people with serious skin conditions.

Camp Horizon Every year, the American Academy of Dermatology also sponsors Camp Horizon -- a weeklong summer camp in Millville, PA, for young people with serious skin conditions.

Camp Wonder
Camp Wonder is a wonderful weeklong summer camp for kids, teens and adults with skin disorders. Camp Wonder is located in Livermore, California.

Misc. Links

• Mothers from Hell 2 Advocacy For the Rights of Individuals With Disabilities Organization.

• Biomedical Frontiers

• Medline Search Engine Just type "Epidermolysis Bullosa" or anything else you might be searching for...great site!!

• Wound Care Institute

• Help sought for Israeli with EB

 Links to organizations that support EB

• March of Dimes

• NORD National Organization of Rare Disorders

 Organizations that have donated money/time to EB research

• Forever Young Foundation

• NuSkin

Personal Websites from Families

EB Info World Proudly Supports...

	Brave Kids is a web resource center for kids with chronic or life threatening illnesses. It includes a Resource Directory, Family Resources, a Matching Program to give children from poor families a computer, a kids corner and more. GREAT SITE!!!
	Ronald McDonald House is a "home-away-from-home" for the families of seriously ill children receiving treatment at nearby hospitals. Both EB Clinics at Stanford and Chapel Hill have one of these nearby. What a great cause!!!
	Make a Child Smile is a website where kids with life threatening illnesses are featured monthly. All they ask you is to send the "Featured Kids of the Month" a card. EB kids have been featured. Another great cause!!!
	Make a Wish Foundation is a wonderful organization which grants wishes to terminally ill children. They have granted many wishes to many EB kids. A fantastic cause!
	Shriners' Children Hospital is another wonderful organization which provide expert, no-cost orthopaedic and burn care to children under 18. They have treated many EB kids. Another wonderful organization. Thank you Brenda for suggesting this link :-)

HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth! It's time again for another birth.
Said the Angels to the LORD above, this Special Child will need much love.
His progress may be very slow, accomplishments he may not show.
And he'll require extra care from the folks he meets down there.
He may not run or laugh or play, his thoughts may seem quite far away,
In many ways he won't adapt, and he'll be known as handicapped.
So let's be careful where he's sent, we want his life to be content.
Please LORD, find the parents who will do a special job for you.
They will not realize right away the leading role they're asked to play,
But with this child sent from above comes stronger faith and richer love.
And soon they'll know the privilege given in caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.
by Edna Massionilla
December 1981 The Optomist- newsletter for PROUD
Parents Regional Outreach for Understanding Down's Inc.

  

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