1. PhD studentships Expand PhD grant awards for 3-year projects to develop degree graduates into EB researchers. The criteria will be the same as for project grants with the addition of quality of research environment and training for students. DEBRA/MRC clinical research training fellowship: Sep 2022. Opens on 22 July 2022 with a deadline of 7 September 2022. How to apply Application is through the MRC Website, where you can also find guidance on the application process. If you wish to discuss your proposed research area in advance of submission, please contact Dr Sagair Hussain, our Director of Research.
2. Clinical research fellowships Expand Clinical research fellowships Awards for registered healthcare professionals to establish themselves as independent investigators to run their own group and develop their own research interest in EB. The aim is to create future leaders in the EB field. In partnership with the Medical Research Council (MRC) DEBRA/MRC Clinician Scientist Fellowship: Sep 2022 Opens on 22 July 2022 with a deadline of 7 September 2022 How to apply Application is through the MRC Website, where you can also find guidance on the application process. If you wish to discuss your proposed research area in advance of submission, please contact Dr Sagair Hussain, our Director of Research: [email protected].
3. Non-clinical research fellowships Expand Awards to support post-doctoral researchers at early and intermediate stages of their career to establish themselves as independent investigators to run their own group and develop their own research interest in EB. The aim is to create future leaders in the EB field. In partnership with the Medical Research Council (MRC). DEBRA/MRC Career Development Awards: Sep 2022 Opens on 5 August 2022 with a deadline of 14 September 2022 How to apply Application is through the MRC Website, where you can also find guidance on the application process. If you wish to discuss your proposed research area in advance of submission, please contact Dr Sagair Hussain, our Director of Research: [email protected].
4. Small grants Expand Small grant awards support small pilot studies such as generation of preliminary data or feasibility studies which would not normally attract funding. The aim is to make novel ideas more competitive for larger follow up funding grants. We have partnered with Fight for Sight to offer a small grant up to £15,000 to clinical or research scientists to support vision loss related research in Epidermolysis Bullosa and should be used to collect preliminary/pilot data to develop follow on applications. Researchers currently working in fields outside of vision research are welcome to apply. DEBRA/Fight for Sight Small Grant Awards: July 2022. Opens early April 2022 with a deadline of 28 July 2022 5pm. How to apply Application is through the Fight for Sight website, where you can also find guidance on the application process. If you wish to discuss your proposed research area in advance of submission, please contact Dr Sagair Hussain, our Director of Research: [email protected].
5. Project grants Expand Awards up to three years will be available to researchers through our research calls. Funding will be judged on relevance to EB, scientific merit and novelty. Applicants must demonstrate the potential benefit to EB patients in the research proposal.
6. Programme grants Expand Awards will be provided where collaboration between several groups is required such as clinical projects adopting a multicentre approach.
7. To apply directly to DEBRA UK Expand To receive application information and be kept informed of all future funding opportunities, please register your interest with [email protected]. We would encourage all interested applicants to register their contact details with us so we can keep you informed of funding opportunities. If you have a project proposal for consideration, please submit a Summary Application online. Summary applications that meet our criteria will be reviewed by our multi-disciplinary Care and Research (CAR) Committee which includes lay representation so that families who suffer with EB can be involved in our funding decisions. Successful applicants will be requested to submit a full application which will be subject to peer review and consideration by the DEBRA UK Research Advisory Panel whose recommendations will be presented to the trustees of DEBRA UK for approval. Peer reviewers will be experts in an appropriate field and declare no organisational, collaborative, personal or other conflict of interest. Applicants will have the opportunity to see and respond to reviewer comments. DEBRA UK Research Advisory Panel members are required to sign a non-disclosure agreement and adhere to the panel’s Terms of Reference and Conflict of Interest policy. Feedback will be provided on unsuccessful applications. Successful applicants for DEBRA UK funding will be paid quarterly in arrears on receipt of an appropriate invoice. An annual progress report will include scientific, financial and lay reports on reaching aims laid out in the original application. Copies of all published papers, submitted manuscripts, conference abstracts and posters should be sent to DEBRA throughout the grant period and thereafter when work funded by DEBRA UK is presented. At the end of the grant period, a final report will be required, including a lay summary, along with a list of publications in peer-reviewed journals. Funding cannot be extended so it is important to define viable outcomes for the period of the grant. Our research policies including terms and conditions are available by emailing [email protected]. You can read our animal testing policy here.
Are dogs allowed? Expand One small dog is permitted in our Weymouth holiday home only, with prior agreement. Additional cleaning charges will apply. This decision has been made to protect our members who have sensitive and serious pet allergies.
Are there any changes to facilities due to Coronavirus (COVID 19) Expand Due to the Coronavirus (COVID-19) pandemic, it has been necessary for all holiday parks to make essential changes in order to meet current Government guidelines, therefore the on-site park facilities, activities, events, etc. may have changed and there may be social distancing and other measures in place for everyone's safety. Some general changes are listed below but please check individual home pages and park websites linked from each page for the latest information. Soft furnishings & decorative accessories (i.e. cushions, throws, artificial flowers, etc.) have been removed from all holiday homes as have all games, books, DVDs, paper leaflets and crayons etc. Excess cutlery, glasses, crockery etc. have been removed (e.g. if the holiday home sleeps up to 6 we will only provide 6 cups, plates, bowls, etc.). Holiday homes are only be used by the person(s) named on the booking form. No other members of the public, other guests or friends are permitted in the holiday home or on the park at any time. Any social distancing measures in place on or around the park are to be followed at all times. Please ensure you are aware of any additional park rules that have been introduced to support the wellbeing of families and staff working at the park, details of which can be found on the holiday park website. Although we and the holiday parks will do our best to make sure families have a safe and enjoyable holiday, it should be recognised that each person is responsible for their own/family’s safety and welfare and must ensure they take all necessary precautions to prevent risk of infection from Coronavirus (COVID-19) during their stay.
Bereavement Support Payment Expand You might be entitled to Bereavement Support Payment if your spouse or civil partner has died and if they either made National Insurance (NI) contributions for at least 25 weeks or died due to an accident at, or disease cause by, work. Additional criteria and more information about the payment can be found on the gov.uk website.
Can I apply for PIP online? Expand PIP cannot be applied for online. You must call the relevant agencies to start your PIP claim. If you are eligible, you will then be mailed a printed form to complete and return by post. To start your PIP claim, please call: England, Scotland and Wales – 0800 917 2222Northern Ireland – 0800 012 1573
Can I apply if I have a mild type of EB? Expand Yes, you can. PIP allowance is awarded based on how your condition affects you in your daily living and/or your mobility, not on the general presentation of the condition itself. People living with EB are affected in different ways so making it clear what the impact of your EB is, regardless of the type or severity is key to a successful outcome. Contact your DEBRA Community Support Manager about your eligibility and individual circumstances.
Can my DEBRA Community Support Manager speak to agencies on my behalf? Expand Only the person claiming PIP is able to speak directly with an agency; however, you can give consent for your DEBRA Community Support Manager to communicate with the agency on your behalf, as long as you are also present on the call. Even if you do not wish for your DEBRA Community Support Manager to speak on your behalf, they will still be able to help in other ways.
Can my employer make me wear a uniform, even if it makes my EB worse? Expand Employers may have a dress code or uniform requirement, sometimes for health and safety reasons. The dress code must not be discriminatory, and employers must make reasonable adjustments as appropriate for their employees. It might help to arrange a meeting with your employer to explain how your EB has an impact on you and explain what would help you (e.g. being able to wear soft trainers of your choice). Visit the ACAS website for more information on dress codes and appearance at work.
Can we check in or out earlier or later? Expand Please ensure that you arrive at the park at the time specified. Current check in time is 4pm and check out time is 10am at all homes. Details will be on your booking confirmation. In order to allow sufficient time for each holiday home to be cleaned in accordance with current government guidelines, it will not be possible to change the allocated check in or check out times.
Can we have friends visit us in the holiday home? Expand The holiday homes are only to be used by the person(s) named on the booking form. No other members of the public, other guests or friends are permitted to stay overnight in the holiday home.
Children’s Funeral Charity Expand The Children’s Funeral Charity offers emotional and financial support to families in England and Wales who have lost a child aged 16 years and younger. The charity aims to help families help with funeral costs not covered by the government fund. Please visit their website directly for more information.
Children’s Funeral Fund Expand An official government programme, the Children’s Funeral Fund helps parents cover some of the funeral costs for children under 18 or if a baby is stillborn after the 24th week of pregnancy, no matter your family’s income or the amount you have in savings. The burial or ceremony must take place in England and covers: Burial and cremation fees (including the cost of a doctor’s certificate) Up to £300 to pay for a coffin, shroud or casket
Do I need to tell my employer that I have EB? Expand If you are working in the UK, you are not required to tell your employer if you have a disability or if you are living with a health condition. Disclosing personal health information should always be a choice that you have made. If your condition doesn’t have an impact on your work or compromise health and safety, then you may choose not to disclose this. However, it might be helpful, especially if you think you may require additional support or adaptations to carry out the role. You can ask your HR department or line manager to keep this confidential. Visit our Talking to your employer page for more information.
Do we receive any discounts or privileges at the parks? Expand Please ask at reception or Owner Services upon arrival as you may be entitled to park discounts but they may vary between holiday parks.
Funeral Expenses Payment Expand To cover other related costs, you can apply for a government-backed Funeral Expenses Payment (at least one parent must already be receiving specific benefits). Scottish residents should apply for a Funeral Support Payment instead. The Funeral Expenses Payment will help cover the following costs: Burial fees for a particular plot Cremation fees (including the cost of the doctor’s certificate) Travel to arrange or go to the funeral Cost of moving the body within the UK (if it’s being moved more than 50 miles) Death certificates or other documents Other funeral expenses – funeral director’s fees, flowers, coffin, etc. Eligible applicants will receive: £700 if the person died before 8 April 2020 £1,000 if the person died on or after 8 April 2020 The Funeral Expenses Payment will not usually cover the full cost of a funeral. This payment will also be deducted from any money you receive from an insurance policy and the deceased’s estate (including any money and property but not a house or personal belongings left to a widow, widower or surviving civil partner). If the deceased had a pre-paid funeral plan, you will only be eligible for up to £120 to help pay for items not included in their plan.
Growing Around Grief Expand Grief professional Lois Tonkin presents a radical idea that grief is not necessarily experienced in different stages or phases but, rather, individuals learn to grow around the grief. Instead of the grief fading over time, this theory suggests that grief starts as a great obstacle. But the grief stays the same size and intensity throughout, and it is the person grieving that grows and matures around the grief.
How are applications assessed? Expand Your Community Support Manager will assess your application and make a decision based on: checking that the items/services are not supplied through statutory services meeting the DEBRA Community Support grants criteria a priority level of low, medium or high current availability of charitable funds in the DEBRA Community Support grants budget You can read more on the above criteria in the DEBRA Community Support Grants Policy Notes: requests for larger sums are discussed and agreed with your community support area or regional manager and the Director of Healthcare, Membership and EB Community Support only support grants that have been authorised are given support grants cannot be given retrospectively