After the diagnosis we are ready with a great deal of information, support, friendly contacts and signposting to other services where needed.
Odds, ends and other useful snippets
Prescription Exemption Certificate
Medical professionals might be able to help you claim a prescription exemption certificate.
mysafehome and mysafefuture
Provides advice and information as well as practical help in buying your own home if you have a disability. They are experts in providing skilled and tailored guidance.
These keys are available free or low-cost for those with a disability or caring for a child with a disability. The local library usually has a stock, or try Tourist Information centres. There is an online list of adapted toilets using RADAR keys and some find this a real help planning a journey or trip. However, it is not always a complete solution, AGSD-UK members have reported that even an accessible loo has not helped them because it was not tailored to their individual needs, especially if they are very tall.
If you are very keen you can set-up a web alert, such as a Google alert, which scans for certain key words and sends you every news article mentioning that term on a daily basis.
Raising the awareness of Lysosomal Storage Disorders
The UK LSD Patient Collaborative Group is comprised of patient organisations representing those affected by Lysosomal Storage Disorders (LSDs). They have joined together to form an action group to work and lobby on behalf of LSD patients and their families in the UK. The group is made up of representatives from various charities in the UK, including AGSD-UK, who provide support and information to families affected by different LSDs.
International Pompe Association
The International Pompe Association (IPA) is a federation of Pompe disease patient’s groups worldwide. It seeks to coordinate activities and share experience and knowledge between different groups.
Patient groups from other countries
It can sometimes be handy to look for useful information gathered in other parts of the world. Of course, some is specific only to the country, but the world of Pompe disease is quite a small one, so consider sifting through information from these sites below.
Related groups in the UK
Other neuromuscular and rare disease groups and collaborations in the UK.
- Metabolic Support UK
- Genetic Alliance
- Medics for Rare Diseases
A sample of websites connected to treatments for Pompe disease.
- Sanofi Genzyme
Remember that your own hospital might have a web page or Facebook page.