Our Community: DEBRA Singapore
In our latest Our Community feature, we’re sitting down with Dr. Ritu Jain, President of DEBRA International and the local DEBRA Singapore chapter, a non-profit organisation which we work with at Accela Finance.
Dystrophic Epidermolysis Bullosa Research Association (DEBRA) Singapore is a support group for patients living with congenital epidermolysis bullosa (EB), a rare and little-known skin condition. The organisation’s goals are to increase awareness of (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 and foster the development of new DEBRA groups and mentor newly established ones.
Read on to learn more about Dr. Jain’s personal experience with DEBRA and how you can help in the organisation’s mission.
The first DEBRA group was founded in the United Kingdom in 1978, how did the organisation get started in Singapore?
DEBRA Singapore came about thanks to Dr. Birgit Lane, a researcher at A*STAR labs in Singapore whose research was focused on epidermolysis bullosa (EB) simplex. There are three types of EB, and she was working on this particular sub-type. She, along with Dr. Mark Goh, a top physician at the main paediatric hospital in SIngapore, and a few other doctors from the National Skin organised a meeting with patients in 2014. It was during that meeting that a patient organisation was suggested, and DEBRA Singapore was registered in May 2015.
DEBRA Singapore was managed by parents and doctors in the first year, it was a struggle to get organised at the start but the group remained focused on just raising funds to support the medical needs of our patients. We would have bake sales at the lab and be happy just to raise a few hundred dollars per year.
How did you get involved with DEBRA and what is your role?
Like many of us involved with DEBRA, I have seen the challenges first hand - my daughter has EB, thankfully, the mildest form. At this point there is no cure for EB and it’s a lifelong struggle, so the best we can do for patients is to manage their pain and make them as comfortable as possible, primarily through light adhesive foam dressings which cover the patient’s body. Of course, patients also need a variety of other protective layers and emollients and we try to fund everything possible.
As with all of our team, I’m a volunteer with DEBRA, on top of my full-time job as an academic at NTU Singapore. In 2016 I took over the presidency in Singapore and also joined the board of DEBRA International as I was doing a lot of work with families in the region. From there, our collective focus at DEBRA Singapore became supporting patients and encouraging the establishment of patient organisations. For this we worked towards raising money through fundraisers and through grants from pharmaceutical companies which allowed us to expand the scope of our work to include providing reimbursement for the purchase of dressings and other medical costs that are borne by patients all their lives. Currently we have about 25 - 30 members in Singapore, and we’re supporting about 10 - 12 patients here. We also invest in awareness raising through events such as the Butterfly Run, participation in humanitarian conferences and other social events in Singapore, and via social media.
Last year, I was elected to be the president of DEBRA International, meaning I’m now responsible for supporting the executive committee in fulfilling the mandate of our 45-50 DEBRA chapters globally. I’ve also been working with our regional team, EB Without Borders, to support families where they don’t have the resources to set up a DEBRA group in their country. Our main focus is to give these families information and connect them with clinical expertise, as doctors in their region may not know about how to diagnose or treat EB, how to take care of wound changes, etc.
I am also very interested in networking in the region and have organised conferences in Indonesia and India in the last several years to meet with clinicians and dermatologists, and also to connect with patients to ensure they’re getting the help they need.
Can you tell us about some of the recent initiatives you’ve spearheaded in Singapore?
Awareness and Fundraising are always our top priorities - for our community here in Singapore, but also for patients in need in other countries.
Earlier this year, we were fortunate enough to be the first ever rare disorders partner with Red Cross Singapore who offered us financial assistance towards the provision of medical supplies and nutrition to Ukrainian EB families impacted by the war. With the partnership of DEBRA Poland and DEBRA Ukraine, we were able to make an enormous difference to patients in Ukraine and those who had had to flee to the surrounding countries. It was very challenging to navigate the laws, licensing and logistics in each country, but very rewarding to be able to help deliver nutrition, dressings, ointment and other medications to patients in need during this challenging time.
Similarly, on September 10th we participated in a regional conference hosted by Red Cross Singapore, where we had a booth to showcase our work and highlight our work to other humanitarian organisations in attendance.
Are there any upcoming events or new programmes coming up that you’d like to highlight?
We’ll be organising another Butterfly Run to raise money for our patients in Singapore - you can check out our documentary, Butterfly Children, to learn more about where the name comes from. We saw great success with our last event and look forward to sharing the news of our next run - keep an eye on our website for more!
We’re also planning a fundraiser for early December to help raise money and continue supporting our patients.
What challenges or benefits have you seen from operating in Singapore?
When we first launched DEBRA Singapore, the country didn’t have a rare disease policy, meaning EB wasn’t recognised by the government. We do now have a rare disease policy in Singapore, but recognition is very slow and currently only 5 disorders are recognised and given support by our health system - which is why it is so important for us to continue raising funds to support patients.
In addition to very few people having or being aware of EB, there are cultural challenges in Singapore when it comes to saving face - often patients are hesitant to accept help, or even indicate if they may need it. Over time, I’ve managed to connect with more and more families and individuals who are open to receiving help.
It’s always a challenge to find the time to focus on fundraising, and to find people to support the work DEBRA Singapore is doing. We need dedicated human resources to lead fundraising efforts and to drive publicity around what we do.
There are also logistical challenges, as important supplies such as dressings for our patients are very expensive in Singapore and are not subsidised, so it can be very time-consuming to manage the logistics of buying supplies from overseas and distributing them to patients.
Tell us about your experience working with Accela.
Accela has been very helpful in taking on the financial management of DEBRA Singapore, the team has been so kind to support us and help contribute to our mission in Singapore. Having Accela takes a big load off my shoulders, as it’s critical for organisations like ours to have meticulous financial management and governance. While we know everything we do is with the right ethics and integrity, it’s vitally important for us to keep a clear record of this to ensure that our donors and government entities continue to trust us. Thank you Accela for believing in us, supporting us and partnering with us!