Update Us

Parents, Patients, Professionals

The Henry Spink Foundation would very much like to hear from you if you can contribute to our database of information. If you have an experience, recommendation or any information which you feel we should know about, please let us know.

We welcome the broadest range of information, for example:

  • Biochemical research
  • Medical Trials
  • Published reports
  • Drug development
  • Clinics and hospitals
  • Therapies
  • Personally recommended practitioners
  • Experience of treatments
  • Complementary medicine
  • Nutritional medicine
  • Vitamins and supplements
  • Equipment
  • Voluntary Organisations

A typical entry in our database will include the names of related disorders, syndromes and rare conditions; the names of international research, educational and treatment centres; subjects and sources of research; conventional and alternative therapies; the names of therapists and therapy centres; charitable organisations, information services and support groups.

Please contact us with details of personal experiences, research programmes, trial results, drug developments, nutritional therapies, specialist clinics, therapy centres and related topics. We also welcome information from organisations large and small working with particular disabilities or patient groups.

Jet Charter, Links

Click here for a full list of information fact sheets

Checklist

A useful guide to points worth considering before embarking on a new treatment or therapy. Click here

Your stories

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Alex was born with rare genitic disorder called Pelizaeus-Merzbacher Syndrome were it affects his nervis system nd their are 4 type and he has the …

Kathleen's Struggle

Kathleen did not move much in utero. The doctors forecasted that she would probably have a cleft lip. Further tests didn't clearly indicate …