ALD Life Community Weekend Terms


1. Booking Reference

Please enter a reference to identify your booking, and make a note of it. This will be used if you need to book and pay for additional rooms not included in the free package (details below).

2. Guests that qualify for a FREE event place

Please provide proof of diagnosis/BMT (hospital letter) and/or PIP (latest award letter) by email to (using subject: Diagnosis/BMT/PIP Confirmation) with your contact details.

3. Guests that qualify for a DISCOUNTED event place

Payment required for discounted guest places (see link to make a secure payment at the end of the booking form):

ROOM FEES: Rates include all meals. Our Early Bird rate is £25 per person per night (pppn) is valid until 5pm on 29 February 2016. The rate then increases to £37.50 pppn. For single room occupancy the applicable rate will double.

4. Hardship Funds

Hardship funds are available for guests attending the ALD Life Community Weekend. Please send an outline of your circumstances to along with your contact details.

5. Room & Equipment Requirements for your Group

Each room holds up to two adults and will have one double bed OR two single beds (twin room). An extra cot can be provided for small children (must be arranged in advance). See note above regarding free guests and paying for additional rooms. Please note, specific rooms and cots are subject to availability.

6. Note for all participants

ALD Life understands and appreciates the diversity of our ALD and AMN communities and that some individuals have ALD symptoms causing unintentional inappropriate behaviour. Parents and carers should note that all individuals with such symptoms must remain supervised at all times, and, if deemed necessary, removed from activities where their behaviour causes upset to other participants.

ALD Life is confident that all participants appreciate the variety of symptoms caused by ALD and, if any individual behaviour causes concern, an ALD Life staff member should be alerted to resolve the situation.

If you require any assistance, please do not hesitate to notify ALD Life on booking, and we will endeavour to provide appropriate supervision according to the needs of the individual. In addition, all participants should observe the hotel’s terms and conditions.

7. ALD Life Community Weekend – Booking & Payment

To make your booking for the ALD Life Community Weekend, please go to the online booking form, enter your details and click Submit.

a) If you have additional guests in your group that are not included in your FREE pacakage, please go to the ALD Life Weekend payment page to pay for additional rooms (the booking form must be completed first).

b) If you have a free package but would like to make voluntary donation, please go to:

8. Cancellation Policy

As a charity reliant on donations, ALD Life is keen to ensure that money lost through cancellations is kept to an absolute minimum, and that as many people as possible have the opportunity to attend this event.

Therefore an administration charge of £25 per person will be deducted from any refund for cancellations made before 30th April 2016. If you cancel your booking after 30th April 2016, the full cost is likely to be payable.

If ALD Life cancels an event, participants will be offered a full refund.




20 hours ago

ALD Life

Emory University is looking for families in Georgia with individuals who were diagnosed through newborn screening with ALD, as part of efforts to include ALD in the Georgia newborn screening panel. Participants would be speaking with Emory University via phone or email at their convenience. If you would like to give your input, please reach out to Dawn Laney with Emory University at or ‪404-778-8518‬. ...

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