Part 1 of this survey dealt with the PRP Support Group website: http://www.prp-support.org
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Question 1. Overall, what is your opinion of our PRP Support Group website?
| Favourable |
   96.6% |
(56) |
| Unsure / don't know |
3.4% |
(2) |
| Unfavourable |
0.0% |
(0) |
| TOTAL |
100.0% |
58 |
|
|
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Question 2. How often have you visited our website during the last three months (since 1st May)?
| Daily, or a few times each week |
34.5% |
(20) |
| Weekly, or a few times each month |
20.7% |
(12) |
| Monthly, or less frequently |
34.5% |
(20) |
| Never |
10.3% |
(6) |
| TOTAL |
100.0% |
58 |
|
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Question 3. What do you think is the most useful or most helpful feature of the website? [One feature only]
There were 58 individual responses to this question. Three (3) responses directly commented on the email list, and those responses have been moved to Question 13. The remaining responses have been grouped and summarised as follows:
| Information |
   34.0% |
(18) |
| Questions and Answers |
18.9% |
(10) |
| Treatment and Drugs |
13.2% |
(7) |
| Communication |
13.2% |
(7) |
| Support |
7.5% |
(4) |
| Personal Stories |
5.7% |
(3) |
| Articles |
5.7% |
(3) |
| General |
3.8% |
(2) |
| Other |
3.8% |
(2) |
| TOTAL |
100.0% |
56 |
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Detailed responses are as follows: |
INFORMATION (18 responses)
- As a general source of information regarding PRP.
- Being able to gain information.
- Description of PRP - that first time users can breathe a sigh of relief that they have found recognition and identification of their disorder and learn more about it.
- Exchange of information.
- Have found description most useful.
- I think it is especially useful to newly diagnosed PRP patients. It is important for them to see that their symptoms are often the same for everyone.
- Also, it is very useful for newly diagnosed patients to see treatment options of different people.
- Info on what it is and it gives us info to give to others.
- Informative.
- Knowledge about the symptoms of PRP.
- Links to sites that describe the disease. I looked at the site a lot in the beginning of my onset but not after maybe a month. I get the support group e-mails which can have some good information.
- Other peoples experiences and treatment.
- PRP description.
- Source of information for those interested.
- The home page. Doctors and dermatologists diagnose PRP but don't tell one what to expect through the journey of PRP.
- The information about the disease.
- The information from other PRPers who are in remission, with helpful remedies and treatments
- The literature regarding PRP!!
- The ease in which we can find the topic of interest (bold colours, large print, clear set up) and go to it.
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QUESTIONS AND ANSWERS (10 responses)
- I just recently found the website and the Question & Answer paper was excellent. In fact I thought that I wrote the paper. It reinforced the fact that my dermatologist had the right diagnosis. It also explained the medical terms. I also found the personal stories very helpful.
- PRP Questions and Answers / Q&A document (6 responses)
- The Q&A is by far the most helpful aspect.
- The FAQ section.
- The most useful would be the definition and descriptions of the types of PRP followed by the Frequently Asked Questions.
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TREATMENT AND DRUGS (7 responses)
- I used the website when my daughter was at her worst with the illness, would like more information about medication. Lessons learned.
- Medications and treatments for PRP (3 responses)
- New drug possibilities.
- Treatments used by correspondents and drug effects.
- The exchange of information relating to: 1. Updated, chronologies of medication treatment (or no treatment) and 2. Palliatives used for the various symptoms.
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COMMUNICIATION (7 responses)
- Freedom to talk about your problem.
- Being able to "talk" with others who have walked down this road before.
- Being able to express our feelings.
- Current discussions and potential discussions for newcomers that need support.
- Learning from each other about PRP.
- Hearing information from others.
- Networking
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SUPPORT (4 responses)
- Everyone really seems to do anything they can to help other members. Information, encouragement, references.....Jeannette (a PRPer in Australia) is the latest example. I've seen where several members have called her, willing to help with translation (Jeannette speaks Spanish.)
- Just that it is there for individuals who need to learn more about PRP and info for their caregivers and health care professionals.
- The ability to receive support from others with the disease.
- The most useful feature of this website is the fact that there is a PRP Support Group website for PRP. I am so thankful for the website and the support that it offers to me and all other PRPers.
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PERSONAL STORIES (3 responses)
- Personal Stories are good for new comers. My only critisism of the stories is that they are not updated from time to time by the author.
- The member stories as well as the up to date medical information. The ease of use is great as well.
- Personal stories.
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ARTICLES (3 responses)
- Articles, descriptions and images (3 responses)
|
GENERAL (2 responses)
- Various topics.
- Wide assortment of opinions.
|
OTHER (2 responses)
- I don't use the website frequently so I can't comment.
- I have never read any feature yet, so am excited to receive the first one.
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Question 4. What do you think is the least useful or least helpful feature of the website? [One feature only]
There were 58 individual responses to this question. Eleven (11) responses directly commented on the email list, and those responses have been moved to Question 13. The remaining 47 responses have been grouped and summarised as follows:
| Specific Item or Topic |
17.0% |
(8) |
| Personal Stories |
12.8% |
(6) |
| Archives |
6.4% |
(3) |
| New member |
4.3% |
(2) |
| Other |
25.5% |
(12) |
| None / No comment / etc |
34.0% |
(16) |
| TOTAL |
100.0% |
47 |
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Detailed responses are as follows: |
SPECIFIC ITEM or TOPIC (8 responses)
- The links to arcane medical articles.
- It must be the Glossary as I am able to look words up elsewhere.
- "Other Websites".
- Other Information.
- History.
- Template appearance with advertisement links.
- That's hard to determine. Each person has their own needs. How can I, or anyone, decide which one is the least useful???
- Most people with PRP won't find it, I'm afraid.
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PERSONAL STORIES (6 responses)
- Although I know it is an important part of the interaction, it is difficult to read how bad some folks have PRP. I got mine under control fairly quickly and have not had some of the severe problems others have had. I read their stories and worry that it may be the future for me.
- I don't think it is encouraging for new patients to read about extreme cases since these apply to very few people.
- Personalised descriptions from which it is hard to extract meaningful information.
- Personal stories (3 responses).
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ARCHIVES (3 responses)
- The archive search is a bit hard at first if you are not sure where to go and you get to the first archive where you cannot serve. Why is there a link to it if it cannot be used? Can it ever be used? What would we go there for if it could be used? If it will never be able to be used, why do we have the link?
- Archives difficult to use - very confusing.
- Mailing archives.
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NEW MEMBER (2 responses)
- Being very new to the Website it would be difficult to say.
- I'm new and haven't read any yet.
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OTHER (12 responses)
- I enjoyed it all, I was able to navigate to parts that I needed easily...the parts that were not helpful to me would be helpful to others..
- Anything not helpful to me, I just skip over.
- All features useful and helpful.
- I can't think of a least useful part!
- I think it all relevant.
- It is all helpful, I am sorry I can't say that anything on this site is not helpful.
- No "least useful or helpful" choice. All topics have merit.
- All helpful.
- Really, all is useful that I can think of.
- Think it is all helpful so cannot address this question.
- Its ok...
- Would have to read entire website to assess that.
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NONE / NO COMMENT (16 responses)
- Various responses of this type, e.g. "None", "No comment", "No opinion", etc. (16 responses)
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Question 5. Do you find the website easy or difficult to navigate?
| Easy to navigate |
63.8% |
(37) |
| Neither easy nor difficult |
29.3% |
(17) |
| Difficult to navigate (please explain below) |
6.9% |
(4) |
| TOTAL |
100.0% |
58 |
|
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Question 6. If you find the website difficult to navigate, please explain why. What changes could we make to improve the ease of navigation?
There were 6 individual responses to this question. One (1) response directly commented about the email list, and this response has been moved to Question 13. The remaining responses were:
- I believe that the PRP website needs some modifications, especially to the opening page: Keep the opening page the same with the following exceptions: Add the information on the second page "About the Support Group" to the opening page, but not "Our Stories" (this doesn't belong on the opening page). Remove and put the other information on subsequent pages including "Contributions Articles and Other PRP information". Also, "Recent Changes", etc. I believe that first time PRPers or others that view this page should know what we are all about. "articles, recent changes, stories, etc." need headings or whatever on subsequent pages ... My point is don't clutter up the opening website page.
- I'm still having a problem accessing the archives by subject. I have seen it explained and still can't access it.
- It is not the navigation but the information. I wish it had a section with a list of what people have used and where they found things they use. There is some of this info but it could be much more informative and extensive.
- I find it difficult to know which web address I need to go into.
- No changes are needed.
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Question 7. The following is a list of topic headings from the website. Please indicate your opinion of the need for any change(s) or additions within each heading using the following scale:
1: No change needed
2: Minor change needed
3: Moderate change needed
4: Major change needed
N/A: no opinion
Responses that indicated no opinion (N/A) have been ignored in the following table:
| Web Page Headings |
Need for change or addition |
|
|
None |
Minor |
Moderate |
Major |
Total |
|
# |
% |
# |
% |
# |
% |
# |
% |
# |
% |
| Home Page ... Welcome |
40 | 83.3% |
3 | 6.3% |
1 | 2.1% |
4 | 8.3% |
48 | 100.0% |
| About PRP ... Description |
45 | 88.2% |
2 | 3.9% |
2 | 3.9% |
2 | 3.9% |
51 | 100.0% |
| About PRP ... Articles and Images |
39 | 76.5% |
5 | 9.8% |
6 | 11.8% |
1 | 2.0% |
51 | 100.0% |
| About PRP ... Questions and Answers |
41 | 82.0% |
4 | 8.0% |
3 | 6.0% |
2 | 4.0% |
50 | 100.0% |
| About PRP ... Personal Stories |
34 | 73.9% |
6 | 13.0% |
2 | 4.3% |
4 | 8.7% |
46 | 100.0% |
| About PRP ... Medications and Treatments |
38 | 74.5% |
7 | 13.7% |
2 | 3.9% |
4 | 7.8% |
51 | 100.0% |
| Support Group ... History |
44 | 91.7% |
1 | 2.1% |
2 | 4.2% |
1 | 2.1% |
48 | 100.0% |
| Support Group ... Join Online Discussion |
35 | 77.8% |
2 | 4.4% |
5 | 11.1% |
3 | 6.7% |
45 | 100.0% |
| Support Group ... Discussion Archives |
35 | 74.5% |
2 | 4.3% |
3 | 6.4% |
7 | 14.9% |
47 | 100.0% |
| Support Group ... Surveys |
35 | 76.1% |
4 | 8.7% |
5 | 10.9% |
2 | 4.3% |
46 | 100.0% |
| Support Group ... Feedback |
33 | 76.6% |
6 | 14.0% |
2 | 4.7% |
2 | 4.7% |
43 | 100.0% |
| Other Information ... Glossary |
37 | 77.1% |
6 | 12.5% |
2 | 4.2% |
3 | 6.3% |
48 | 100.0% |
| Other Information ... Bibliography |
38 | 82.6% |
4 | 8.7% |
2 | 4.3% |
2 | 4.3% |
46 | 100.0% |
| Other Information ... Other Websites |
29 | 65.9% |
7 | 15.9% |
4 | 9.1% |
4 | 9.1% |
44 | 100.0% |
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Question 8. If you think that changes or additions are required for any of the topic headings listed above in Question 7, please provide a brief description.
There were 18 individual responses to this question. Some responses covered multiple topics, and have been split by topic. One (1) response directly commented about the email list, and this response has been moved to Question 13. The responses have been grouped and summarised as follows:
MEDICATIONS AND TREATMENTS (7 responses)
- Medications and Treatments: If feasible, include additional information contributed by members listing specific prescription and over-the-counter topicals that have been used effectively - either alone or in combination.
- Medications/treatments: I found that not all meds were listed and what reaction it had or if how long to see change etc.
- Would like more information about Medications and Treatment. Have not had the opportunity to join on line discussions. The more information the better.
- Medications and Treatments: I do believe there are other treatments / ointments / shampoos, etc. out there presently being used. Didn't we, at one time, fill out a survey where we listed all our treatments/ointments, etc.?
- More information about what people have done and where they get their treatments (e.g. Sauna suits, nitrile gloves, ointments, creams, etc.).
- I also think that alternative treatments need more information posted on the site.
- More articles on any treatments (there may not be more).
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ARCHIVES (4 responses)
- As one progresses through PRP, the Archives become the most effective reference - can we, perhaps, fix the access problem?.
- I can't access the Discussion Archives. When I try to view an item I get message "Oops! We can't find the page you requested! Probably something is wrong.
- Hard to do the archives search. I never had any luck, so I quit trying.
- Archives ... We save way too much.
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QUESTIONS AND ANSWERS (2 responses)
- For some reason new comers are not reading the Q&A first before asking questions. Perhaps it is more comforting to make contact with "a" person. Make that document more inviting at the get go.
- Before a person joins the "PRP discussion group", they should have to read everything on the website, and if not everything, they should at least read the "Questions and Answers". If they had the basic knowledge of PRP beforehand, it would save a lot of subsequent questions.
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ARTICLES AND IMAGES (2 responses)
- Articles and Images: Is there any way to develop a way to enlarge the images? It is hard to discern the problems and reality of the images in their present format.
- I feel that some of the photos do not wholly represent PRP.
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PERSONAL STORIES (2 responses)
- Personal stories should be kept to a minimum of words...maybe 700-800 words. Should consider guidelines for personal stories so that the contributor of the story doesn't get "carried away". The guide lines should contain, specific dates of onset, etc; age; geographic location; medications, topicals, moisturizers; is your physician a dermatologist, family doctor, or other; appearance of skin at this time, etc., etc., etc. Maybe a person who wants to tell their personal story should have a set of questions regarding the above, with the last item showing "Other Personal Information". This may appear to be a very regimented approach and may take away from the "Personal" part of the story, but may help the "PRP Group".
- Personal stories need to be updated to the present.
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SURVEYS (2 responses)
- Surveys should continue to be done in a professional manner - organized and accurate. This should not be done by an individual member without sharing results.
- I think that the surveys need to be posted and left up for eternity.
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SINGLE TOPICS OR NON-SPECIFIC RESPONSES (8 responses)
- I find the Glossary hard to understand. Anyone who doesn't have knowledge of the terminology of the skin problems could not follow their meanings. (My opinion only).
- Keep updating bibliography and other websites.
- History could be part of the introduction.
- PRP and the eyes should be more prominent.
- Just add more information.
- Minimize redundancy on web pages.
- I honestly can't say that I have gone through all the segments of the site.
- Don't know.
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Part 2 of this survey dealt with the PRP Support Group mailing list, prp-l@tip.net.au (also known as the discussion list)
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Question 9. Overall, do you think the number of daily Support Group e-mail messages is:
| Too few |
1.7% |
(1) |
| About right |
81.0% |
(47) |
| Too many |
17.2% |
(10) |
| TOTAL |
100.0% |
58 |
|
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Question 10. Support Group e-mail messages can be received by subscribers in one of two ways: as individual messages, or in "digest mode". With digest mode, all individual messages are grouped together into a "digest" message, that is normally delivered once per day.
Are you aware that messages can be sent in "digest mode"?
| Yes |
55.2% |
(32) |
| No |
44.8% |
(26) |
| TOTAL |
100.0% |
58 |
|
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Question 11. Have you ever used "digest mode" to receive PRP Support Group messages?
| Yes |
22.4% |
(13) |
| No |
77.6% |
(45) |
| TOTAL |
100.0% |
58 |
|
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Question 12. Have you used our Discussion Archives to read past Support Group e-mail messages?
| No - I did not know the archives existed |
10.3% |
(6) |
| No - I know the archives exist, but I have not used them |
29.3% |
(17) |
| Yes - I have used the archives occasionally |
46.6% |
(27) |
| Yes - I have used the archives regularly |
13.8% |
(8) |
| TOTAL |
100.0% |
58 |
|
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Question 13. Are there any additional comments you wish to make about our Support Group mailing list?
There were 15 individual responses to this question. Some responses covered multiple topics, and have been split by topic. In addition, 3 responses to Question 3, and 11 responses to Question 4, that directly commented on the email list, have been included here. The responses have been grouped and summarised as follows:
GENERAL COMMENTS (16 responses)
- The site is great and works fine and the mailing list works and has a human element that cannot be 100% controlled. This is the most orderly mailing list group I have even been with or seen.
- Sometimes there are far too many, other times, too few. I guess with a group as we are, you just take it as it comes. There will always be newcomers, and, thankfully, they found us. I know how it helped me.
- We have found that stress is a very serious problem for PRP patients and I know that being able to express ourselves is the best antidote to stress.
- I do not think most people question their doctors and they do not understand this: more focus should be added to the risks of taking these meds in the home page too or sent out periodically to the group in the e-mails.
- I wish the obnoxious few could be toned down [...] ... arrghhh.
- Good source of information and forum for questions and discussion.
- Good information.
- Works great.
- I think it is the on-line discussions that have been most important to me. To be able to discuss my problems with somebody who knows what I am talking about has been such a great support through all of this. Don't know what I should have done without it. I have been on-line practically every day for about a year or so! [Response to Q3]
- I like to read the emails I receive daily. Very helpful. [Response to Q3]
- Seeing the e-mails back and forth. [Response to Q3]
- I think the discussion forum should be organised so it is easier to follow. [Response to Q4]
- I rarely look at the past discussions. [Response to Q4]
- Some e-mails sound as if they are the only authority. [Response to Q4]
- The odd negative email. [Response to Q4]
- I am a great believer that people should be allowed to speak up of any issue, as long as they don't speak badly about any person or are insulting anybody personally. [Response to Q8]
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NON-PRP MESSAGES (9 responses)
- A great many emails are not relevant to the group and should (in my opinion) be sent directly rather than to the group. It is very informative and useful when people email details of their symptoms, progress, concerns, etc. But these are always followed by a number of emails expressing comfort, thanks, etc. These (response) emails should definitely be sent, as they do give comfort and show kindness, but they should be sent directly to the person concerned.
- I do have to say, there are a few members who feel they have to answer each and every e-mail, whether or not they have something to offer. I really don't feel that is necessary or advisable. Let's keep the lines open for constructive talk.
- I wish comments were limited to symptoms and discussions of remedies.
- Less interested in online chat.
- Some members tend to regard this as a chat room. I believe the purpose of this website is a library with people as the reference books. [Response to Q4]
- Talking about things not associated with PRP. [Response to Q4]
- Reading some emails that have no bearing on PRP. [Response to Q4]
- Personal messages and non treatment related content. [Response to Q4]
- E-mails about everything but PRP. [Response to Q4]
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LIST MODERATION (4 responses)
- I like the fact that this group is moderated.
- I have been concerned recently about censoring the email. We need to be able to provide support to each member [regardless of political and social concerns.] We need to be able to ask how people are doing in their particular circumstances.
- I think that PRP members need to be able to talk about aspects of their lives ... [when someone may be in danger.] We need to stop the censorship.
- Need for moderation. [Response to Q4]
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FORMAT OF MESSAGES (3 responses)
- Not about the mailing list, but it would help if PRPers are occasionally reminded to pay attention to the "Subject" line. I would say that about 70% of the time people do not change the "Subject" line when responding. Sometimes it says one thing and the response is something else.
- Too much text in email responses ... not the replies but all of the other text mixed in the messages. [Response to Q4]
- Don't know if it's my computer, but there is a very large amount of unreadable gibberish between messages. In fact this comprises the majority of each email. [Response to Q6]
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ARCHIVES (2 responses)
- Discussion archives does not work on my system.
- Having the individual messages as attachments which can be opened as selected is excellent. Access is the problem for the archives.
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Part 3 of this survey dealt with alternative or complementary methods for communication among Support Group members.
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Question 14. Additional mailing lists can be established for specific topics (e.g. regional lists for PRPers in different countries or parts of the world, for young children, or specific types of treatments).
Do you think that additional mailing lists should be established?
| Yes - I'm in favour of additional mailing lists |
36.2% |
(21) |
| Unsure / don't know |
29.3% |
(17) |
| No - I'm not in favour of additional mailings lists |
34.5% |
(20) |
| TOTAL |
100.0% |
58 |
|
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Question 15. Bulletin Boards or Message Forums - these are typically web-based, and split into multiple topics. The main difference is that bulletin boards and message forums require you to visit the website to send and receive messages, as opposed to sending and receiving e-mail messages via mailing lists.
Do you think that a bulletin board/message forum should be established?
| Yes - a bulletin board / message forum would be useful |
27.6% |
(16) |
| Unsure / don't know |
32.8% |
(19) |
| No - a bulletin board / message forum would not be useful |
39.7% |
(23) |
| TOTAL |
100.0% |
58 |
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Question 16. Some recently diagnosed members wish to have personal and direct contact with other PRPers by phone or postal mail.
Are you willing to be included in a members-only PRP "contact list"?
| Yes |
65.5% |
(38) |
| No |
34.5% |
(20) |
| TOTAL |
100.0% |
58 |
|
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Question 17. Overall, do you think alternative or complementary methods for communication should be established as part of the PRP Support Group website?
| No, I'm happy with the existing system |
55.2% |
(32) |
| Yes, as a replacement for the existing mailing list |
1.7% |
(1) |
| Yes, but retaining the existing mailing list |
43.1% |
(25) |
| TOTAL |
100.0% |
58 |
|
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Part 4 of this survey dealt with possible changes to the PRP Support Group as an organisation.
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Question 18. Some of the features or additions outlined in Part 3 may require additional ISP (Internet Service Provider) facilities.
Are you willing to make a small financial contribution to the PRP Support Group for these added services?
| No |
36.2% |
(21) |
| Yes - $US5 (or equivalent) per year |
22.4% |
(13) |
| Yes - $US10 (or equivalent) per year |
41.4% |
(24) |
| TOTAL |
100.0% |
58 |
|
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Question 19. Do you think that the PRP Support Group should be incorporated as a non-profit group? [This will permit tax-deductible contributions in the country of incorporation.]
| Yes |
74.1% |
(43) |
| No |
25.9% |
(15) |
| TOTAL |
100.0% |
58 |
|
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Question 20. Should the PRP Support Group be sponsoring medical research into causes, treatments, and cures for PRP?
| Yes |
69.0% |
(40) |
| No |
31.0% |
(18) |
| TOTAL |
100.0% |
58 |
|
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Question 21. Which country do you live in?
Please use the drop-down box to select your country.
| Australia |
12.1% |
(7) |
| Canada |
3.4% |
(2) |
| Denmark |
1.7% |
(1) |
| Netherlands |
1.7% |
(1) |
| South Africa |
1.7% |
(1) |
| Sweden |
1.7% |
(1) |
| United Kingdom |
6.9% |
(4) |
| United States |
69.0% |
(40) |
| Not listed [please specify below] |
1.7% |
(1) |
| TOTAL |
100.0% |
58 |
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Question 22. If your country was not specified in Question 21, please enter it here.
- One person selected "Not Listed" in response to Question 21, but they failed to identify their country here.
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Question 23. Please offer any additional thoughts and feedback to be considered.
There were 22 individual responses to this question. The responses have been grouped and summarised as follows:
FUND-RAISING / NON-PROFIT / RESEARCH (7 responses)
- I did answer #18 and 19, but truthfully, I don't know. I'm not sure I fully understand the full significance of either one, i.e., what ISP facilities would be required, and would the novice know how to install them? Also, relative to becoming a non-profit group, it takes a bit of money to get there. Do we have enough members who would contribute to this endeavor?
- I answered "Yes" to #s 19 and 20 with qualifications. Random thoughts: Volunteer or paid leadership (paid first from member contributions) would need to study carefully the feasibility for success before recommending incorporation to undertake fundraising for such a rare and little-known disease. PRP has not interested many researchers to date. We would need a realistic expectation of receiving research grant(s) from NIH or other large foundation or government program. Otherwise, raising sufficient funds by a group with little name recognition would be difficult or impossible. Perhaps a cooperative effort could be made with an existing foundation, such as Ichthyosis that would benefit both disease categories. I share the frustration of other members that little PRP research has been done, but we need a clear idea of what we expect to accomplish and how to go about it. If experimental drugs are involved, would sufficient numbers of PRP patients volunteer to make the study worthwhile? Many of us have elected to take no drugs. I support the concept under discussion, but because of past personal experience as initiator and director of a non-profit organization, I realize that incorporating is definitely the easy part of the project -- even when the seed grant and operating funds were committed and waiting for us -- no fundraising required.
- This is a great website for PRPers. I am "cleared" now and owe a lot to those who supported me when I started with this debilitating disease. Also, I generally believe we should stay as we are . . . a "PRP Support Group" dedicated to helping each other. Those in the group don't know enough about sponsoring medical research, causes, treatments, etc. It would be a very time consuming and costly project. Even applying for non-profit status would take years..
- The non-profit for tax purposes, sounds complicated. Who will manage that?
- I appreciate the fact that someone is supporting this website already and would not mind sending in some money to help others.
- Where do we send our $10? Please advise! Thank you.
- I don't work now. Sorry l can't give some money.
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GENERAL COMMENTS AND THANKS (15 responses)
- Although I only find about 20% of the activity informative, I believe the current email system is satisfying the needs of most members. I access only through the Group website, so my email 'in-box' does not get clogged. It's easy to read and follow the threads of interest.
- As I have stated I am a newcomer and will probably have further questions and comments as time goes by. I am just grateful to find a PRP Support Group.
- Great site, e-mails are helpful and informative.
- I am a PRP caretaker. My close friend has been hospitalized for months with this awful disease. So I have not been through the whole website. But so far what I have received in emails daily etc has been helpful. I have been able to print out and pass this on to my friend in the hospital.
- I don't think the website needs any changes. Please allow all forms of communication on the emails.
- I have had PRP since July 2005. I was so glad to find this website and learn that I was not alone with this disease. I think that this is a wonderful support system and I want it to continue for as long as possible. I don't know what I would have done without the group's support and reassurance.
- I think it will be great if we could raise awareness about PRP! Not many people are aware of it.
- My husband is in remission now, so we will take a break from receiving e-mails, but I must say that this group was incredible. The website was so informative and the e-mails were life savers. I do not know how we would have survived with out this support group. Thank you so much for the good work you do!
- Thank you for putting the time and effort into helping the group. My son's PRP went into full remission after three or four months, but I cannot describe the stress and worry that my wife and I went through during that time. This group was a godsend, primarily for the questions and answers section of the website, but also by giving us the chance to talk with other people who were in the same position as us.
- The archives are a databank for PRP; perhaps more attention to making the archives known and accessible by dermatologists and other medical professionals, as well as PRPers, would be helpful. Over the past year, after initially absorbing the website, we have not gone back except to the archives for specific queries as to what has been experienced in the past. We have found a daily sort of the email messages invaluable, and we thank both organisers and contributors.
- The web site and mailing group are excellent sources of information and help. I think it is best not to overcomplicate either as many users may be put off using the site if it becomes too difficult to navigate.
- There will always be some who will disagree with the way the PRP group is run, (e.g. being moderated), or the content of the web pages, or the advice offered.
- This and all the people have been wonderful when I had nowhere to turn as my little girl got sicker and sicker. Thank for originating the site.
- Wish for more international membership - outside U.S. Consider a translation feature.
- Would like to be able to communicate with PRPers from the same state/country we live in.
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Thank you to everyone who responded to this survey!
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