Thank you for your interest in uniting the cicatricial alopecia community in your area. We strongly believe in the need to have a supportive, understanding environment for individuals to connect, have access to accurate information, and support each other when living with cicatricial alopecia. CARF supports two types of peer-to-peer programs in local communities— a formalized, medically-supported patient support group and an informal, casual meet-up for members/patients only.

CARF Patient Support Group

Requires Medical Advisor

A CARF Patient Support Group provides individuals with a unique opportunity to meet face-to-face to share their journey with cicatricial alopecia. Two key elements are required to successfully launch a CARF Support Group: 1) a committed patient volunteer leader or group of volunteer leaders, and 2) an engaged medical advisor. The patient volunteer leader is responsible for all the logistics of the meeting, (i.e., location, dates, times), serving as the main contact for all area members and answering questions, and being the liaison between the support group and CARF’s main office. The volunteer medical advisor must be a health care professional certified in dermatology with a focus on and knowledge about hair disorders, who will be accessible to provide prompt responses and medically accurate information to patients who attend the patient support group meeting. The medical advisor is asked to attend the meetings in person, but if there is a conflict, he/she can make themselves available by phone, skype, or answering emails post-meeting. Consistent, regular meetings must be planned.

CARF Connects Networking Group

No Medical Advisor Required

A CARF Connects Networking Group is designed for those members wanting to organize an informal gathering for local support but do not have a volunteer dermatologist to serve as a medical advisor. We know how important meeting others with cicatricial alopecia is toward building your own personal support team. A CARF Connects Networking Group is a great way to get together at an informal location, i.e., restaurant, your living room, coffee shop, to make new friends, share triumphs or struggles, and learn from each other. CARF Connects must be organized and managed by a CARF member and attendees are limited exclusively for patients and their loved ones to protect confidentiality. Dates for meetings can be randomly selected as there is no required formal calendar. However, it is encouraged to plan ahead for greatest attendance.

If you decide to become a leader of either a CARF Connects Networking Group or a Patient Support Group, please complete the application and sign the statement of understanding form in this informational packet and return it to me at the CARF office by email or mail. On the flip side, I know that initiating a patient support or networking group is a big commitment and you may no longer be interested after reading through the materials and requirements. Kindly let me know if you are no longer interested in volunteering in these capacities. And, of course, if you have any questions, please contact me. I look forward to hearing from you!

Sincerely,

Colleen Leader, CARF Program Director
267.613.9811

Patient Support Group Checklist

  • Confirm a patient leader for your group.
  • Secure a medical professional in the field of dermatology to serve as the medical advisor for your group.
  • Contact others who may have an interest in getting involved with your group through your personal and medical advisors’ connections, social media, and the CARF membership.
  • Secure a meeting space, ideally free of charge. Consider your medical advisor’s office, local college or hospital, library, church or community center.
  • Establish a recurring meeting date and time, allowing your first meeting to be about 2-3 months in advance, i.e., the third Saturday of the month.
  • Develop a program agenda about 2 hours long. Although it’s not necessary to have a formal agenda, it’s a good idea to have some questions/topics in reserve.
  • Contact the CARF office with date(s) and location for email distribution to local members and updating the website.
  • At the meeting, be sure to collect contact info and emails of those who attended. This way you can send out future meeting dates and stay in touch.
  • Also, during the meeting, ask if there are any other members who want to help in the planning process. Some of our longest running groups have 2-3 volunteer leaders who divvy up the tasks.

CARF Connects Networking Checklist

  • Pick a date and find a location. We suggest about three months in advance. Consider areas where you can meet with a group of people at no cost. Past CARF Connects have been held in community centers, coffee shops, restaurants, etc. The CARF office can help you brainstorm some venue ideas.
  • Contact CARF with your event details to send out invitations to local members. Event RSVPs will be sent to CARF and the Volunteer Group Leader.
  • On the day of the event, arrive early to set up a CARF sign on the table. We suggest not including the word alopecia on the sign for attendee’s privacy.
  • Allow socializing and sharing to happen organically.
  • Be sure to collect the contact information of those who attend.
  • Suggest a future meeting date or location. If interested, you can plan the meeting again or invite other group members to help you.
  • Be sure to let CARF know about any future meeting dates

Here are some helpful suggestions and tips for leaders of both
Patient Support Groups and CARF Connects networking events.

• Before your meeting, check out areas of the CARF website, our CARF Connects Inspire Page, past news-letter issues, and read the cicatricial alopecia basics.
• Bring a tip or trick that helped with your hair loss; these can be discussion starters.
• Be kind and considerate, but don’t allow one attendee to hijack the conversation.
• After an hour or so, suggest a break to purchase/serve food or use the restroom.
• If a medical advisor is not present at your meeting, you can encourage attendees with questions to post them to the Ask the Doctor section of the CARF website.

More Helpful Conversation & Content Ideas
for a Successful Meeting

  1. Start by introducing yourself and then share your experience with cicatricial alopecia and why you became to be a Volunteer Group Leader. (If there are two leaders, each does this.) Even though it may seem boring or repetitive after a while, it is important to do this at every meeting. It sets the tone, makes newcomers feel a part of the group, and reminds everyone why they are there. More importantly, it also helps people to see that you have experienced the loss they may be feeling for the first time. The most useful program is one in which there is an open exchange of feelings, experiences, questions, ideas, etc., within the group.
  2. Have each person introduce himself/herself and briefly share his/her history with the rest of the group. You can go around the room or ask specific individuals, alternating newcomers and regular attendees. It is important that everyone be given a chance to share. Be careful not to put anyone on the spot but to include them open-heartedly. Family members should be encouraged to come and express their views.
  3. After everyone has been heard, ask if there are any medical questions for the physician leader (if applicable). Allow the physician leader to correct any misinformation before opening up for questions and discussion.
  4. Encourage input and suggestions. Everyone in the group should feel a sense of ownership and involvement. Try not to feel that you, as Volunteer Group Leaders, have to bear all the responsibility. Each group meeting should be filled with an ambience of trust and caring.
  5. Effective group meetings are ones in which a balance is created between airing negative experiences and sharing the warmth of support and friendship. A problem can arise from people relating unhappy stories, especially when it is done repeatedly at each meeting. People can leave feeling worse than when they came! Direct them to think of positive things they have noticed about themselves since experiencing the disease. Learning to see humor in life with cicatricial alopecia will probably not be accomplished in the early stages of your group but should be a goal.

Why have an Icebreaker?

Icebreakers encourage people to get to know each other. It also helps facilitate a more comfortable atmosphere in your group outing. Keep in mind, not all discussions have to be about scarring alopecia. We’ve included some icebreakers to use at your next meeting. Here are some suggested topics:

  • Ask attendees for their favorite tips & tricks
  • Use the CARF Newsletter or blog content for discussion topics
  • Ask if you could go on vacation anywhere, where would you go?
  • Share the most unique characteristic about themselves
  • Two truths and a lie
  • Say you’ve been exiled to a deserted island for a year. You are told you may take three things you want, apart from the essentials. What would you take and why?

Tips when hosting a guest speaker:

  • Presentations should be no longer than 20 minutes.
  • The physician leader is a good resource for updates and special talks on treatments and research, or may arrange for appropriate speakers from the medical community.
  • A respected psychologist may give some coping tips. Past topics include ‘Hair loss and emotions’ and ‘Self esteem and confidence building.’
  • A wig stylist can demonstrate wig types and how to care for wigs. Remember that most folks with cicatricial alopecia do not require a full wig; if needed, most use a partial hairpiece.
  • Cosmeticians may demonstrate effective use of corrective cosmetics (be sure these people don’t use your group for free advertising).
    Keep in mind that speakers are not required for a successful meeting.

Frequently Asked Questions

How often should we meet?
It is up to you! Consult with your planning committee to decide what is best for your group and be sure to coordinate with your medical advisor too. Typically we recommend meeting 2-4 times per year. Most groups meet once every three to six months.

What should I expect the average attendance of each meeting to be?
The number of members involved in your group is unpredictable and will fluctuate. Providing support to even one person should be considered a success! On average, anywhere from 5-20 individuals will attend a meeting. CARF Connects Patient Networking Groups generally have 3-7 people in attendance. It’s a good idea to plan for more, but don’t be discouraged by a smaller turnout.

How do new members hear about our group?
Here’s where your planning can get creative! Set up your meeting dates for a full year so members can plan ahead. The CARF office will send emails to members in your area and post on the website and Facebook page to promote awareness. If you have a medical advisor or relationship with your dermatologists, ask if they are willing to post information about your meetings in their offices. Hairdressers are great networking sources, as are local wig shops.

How do you announce your meetings?
Once a core group has been established, each meeting can be announced via phone calls, email, or mailings. Email contacts, website and Facebook postings have been found to be most efficient and is, of course, inexpensive compared to postal mailings. It is best to allow at least three weeks between notification and the actual meeting so that people can plan accordingly. You will find that people will make changes in their schedules to attend group meetings! Please remember to use the “bcc” feature when sending emails to maintain meeting attendee privacy.

How do you maintain a positive vibe at the meetings?
It’s important to keep a sense of humor. If your group is established with a human tone, with laughs more common than tears, members will feel more comfortable and will be more willing to open up. Some specific tips include having speakers on self-esteem and confidence building.

How should you avoid or deal with negative situations?
Make your group meeting a comfortable experience. Incorporate brainstorming into your meetings so that everyone’s voice is heard at each meeting. Have the ability to change the subject quickly and have the resources available to put a positive spin on a compromising topic. Remember to stress that all are entitled to their own opinions; the purpose of the group is to share experiences, offer supportive comments, and not feel judged.

How should I divide the responsibility within the group?
It is important to get the feel of your group before you delegate responsibility. Once the group has formed, you will find that certain members will gravitate to certain responsibilities, depending on their desire to help and their resources. Some groups find it most effective to have only a couple of members carry most of the load. Know your group and their capacities before you make any assumptions about their roles.

How are medical issues handled during meetings?
General medical questions can be answered by the medical advisor. Tell the group that it is not possible to give advice to individuals and they need to keep their questions of general interest to everyone. If it’s a CARF Connects group, please remind attendees that medical questions can be posted to the Ask a Doc feature on CARF’s website.

How do you structure your meetings to include emotional support?
This is where the power of group brainstorming is often helpful. Cover all the topics dear to the members of the group. Allow yourself to be available for a one-on-one conversation with individuals in your group outside of the meeting, or refer them to one of CARF’s Patient Outreach Volunteers.ost them to the Ask the Doctor section of the CARF website.

Support Group & CARF Connects Leaders Criteria & Commitment Form

Thank you for your interest in being a volunteer leader for your area for either a Patient Support Group or a CARF Connects Networking Group. Please review the following Volunteer Group Leader criteria, sign and return this form along with your completed application form to the CARF office. A member of the CARF team will follow-up with you.

Volunteer Leader Criteria & Responsibilities

  1. CARF will not appoint any volunteer leader who owns or is employed by an organization or for-profit business selling or providing services to people with cicatricial alopecia.
  2. It is required to have an active email address to communicate with patients and be willing to receive phone calls from meeting attendees.
  3. Volunteer leaders are required to stay in close and frequent contact with the CARF office and notify them of any changes in your contact information.
  4. A minimum of two regular meetings is required per year (with recommended number of 2-4 meetings per year) and you must notify the CARF office of planned meeting dates/times/locations and volunteer leaders phone and email addresses. Any changes to the scheduled meeting dates need to be reported to the CARF office as soon as possible so materials and the website can be updated accordingly.
  5. Volunteer leaders may use the CARF name only after you have agreed and signed to these criteria and the terms listed in the statement of understanding. Your signature on these forms signifies your agreement.
  6. Leaders must maintain the privacy of those who attend a meeting, including not sharing any identifying or contact information without an individual’s permission.
  7. Listening, connecting, and facilitating interaction between individuals with cicatricial alopecia is your most important role as a Volunteer Group Leader. You understand that by providing up-to-date information and personal experience, you will likely have a profound impact on someone who needs it.
  8. If someone needs additional support, please refer them to either CARF’s Patient Outreach Volunteers or recommend at mental health professional in your area.

Remember…

A Volunteer Group Leader is committed to providing a resource for individuals to find emotional, medical, and cosmetic support for their cicatricial alopecia. The goal of your group is:

  • To offer support to all individuals and their families through interaction within the group.
  • To offer a forum in which individuals may meet with others who have regained self-confidence and self-esteem.
  • To reach out to other individuals with cicatricial alopecia in the community and bring them into the group.
  • To provide information and education about cicatricial alopecia to the general public.
  • To provide current medical research updates as supplied by the CARF office
  • To support CARF in fundraising for research and CARF activities.
  • To promote CARF and engage fully by sharing the CARF newsletter with meeting attendees, contributing newsletter articles, and reporting to the CARF office on an ongoing basis.

By signing this document, I acknowledge, understand and agree with the criteria for a Volunteer Group Leader as stated in this document. The use of CARF’s name is permitted only if you are approved as a Volunteer Group Leader and act in compliance with this document. The title of Volunteer Group Leader and therefore the use of the CARF name can be revoked at any time.

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