SUPPORT GROUPS
A
deeply distressful aspect of having a rare disorder is the
feeling of isolation. When a parent has a baby born with IP
it is most often the case that the physician has never
before seen a case. That family members, whose support
after the birth of a newborn is very emotionally fulfilling
have most likely never heard of IP. Friends, colleagues are
also totally unfamiliar with IP. There are also the
circumstances when an adult with IP has never met anyone
else with this disorder.
These situations lead to a sense of
isolation. The intensity of this feeling varies but it is
always there. IPIF has maintained a list of people who wish
to be in touch with others, but many people live far apart
from each other and have contact only by email or
telephone, not face to face. Also, they frequently do not
speak the same language. It is for these reasons that many
organizations create support groups. They are usually
established by a family member or someone who has the
disorder usually establishes these. These individuals take
it upon themselves to create a support group within their
country. These groups typically elect a president and
frequently a secretary and treasurer. Members are required
to pay modest dues, and meetings are organized by the
elected officers in a central location anywhere from once a
year to several times a year.
Current Support Group Information:
FRANCE
President: Jacques Monnet
Association Incontinentia Pigmenti France (IPF)
1, chemin de vide pot
69370 Saint-Dider au Mont d'or
Tel/fax: 04 78 35 96 32
Email: ipf@incontinentiapigmenti.fr
Website:www.incontinentiapigmenti.fr