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ABOUT US

DEBRA Singapore, a support group for patients living with congenital epidermolysis bullosa (EB) in Singapore.

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UNDERSTANDING EB

At DEBRA, Our goal is to connect, assist and support epidermolysis bullosa (EB) patients and their family members.

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SUPPORT

DEBRA is committed to the well-being of its community.
Patients, Executive committee

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DEBRA AROUND THE WORLD

National groups in over 40 countries - including US and UK

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DEBRA SINGAPORE

Dystrophic Epidermolysis Bullosa Research Association, Singapore (DEBRA Singapore), is a support group for patients living with congenital epidermolysis bullosa, a rare skin condition that in its most severe forms affects all of the body's linings, the skin, the linings of the mouth and oesophagus, and even the eyes.

Our Goals
- Increase awareness of Epidermolysis Bullosa (EB)
- Provide resources, support and funding for EB patients and their families
- Create and strengthen networks for professionals involved with EB care or research, in Singapore and around the world
- Be a regional centre of research excellence, and medical and diagnostic support
- Foster the development of new Debra groups and mentor newly established ones.

HELP A CHILD

One of our ongoing challenges and initiatives is to raise the awareness level of EB in our communities and nationwide. If you would like to help us raise EB awareness, here are some ways you can make a difference.

EVENTS

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BUTTERFLY VIRTUAL RUN

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The DEBRA Butterfly Run returns this year as a virtual run! This run is a fun distance of 5km non-competitive, family-orientated fun run with no stipulated time frame and no specific way of run. You can run, jog, walk with your family or your pet.

The "rules" are simple: All distances pledged are cumulative i.e. you can cover this distance over a period of time. You may run outdoors, or on your treadmill. Just remember to take screen shots of your treadmill meter or your run phone app. Upon completion of the 5km, send us these screen shots and claim your limited edition Butterfly Run Cap. It's that easy!

All proceeds raised will go towards defraying the hefty medical expenses and wound dressings for EB patients.

Your support is important to them, stay fit for a good cause!

Categories and Fees

Category Entitlements Pledge Distance
Individual 1 Cap $25 5 km per person
Twin
Grab a friend, partner or neighbour!
2 Caps $40
Family
Gather the family and keep fit together
4 Caps $75

How to sign up?

Step 1: Click the link below to register

What to do?

Step 2: Run / walk on a treadmill OR run / walk with your pet OR run / walk outside with a running app

Step 3: Run can be accumulated over a period of time. Runners do not have to clock mileage at one go.

How do I receive my entitlement?

Step 4: Email a screenshot of your run (with a running app or photo of a treadmill) to secretariat@debrasingapore.com from the email you registered with in Step 1.

Step 5: Receive your entitlements in the mail after submission of proof.

Have enquires?

Please email to secretariat@debrasingapore.com

ARTICLES

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4 March 2020

  • Psychosocial development in children with EB: risks and recommendations
  • The latest consensus report on the re-classification of inherited EB
  • First EB infographics on different areas of EB clinical and social care pubslihed

Read full article

WATCH OUR VIDEO

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OUR FAMILY

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CONTACT US

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butterfly virtual run