What is the CHM Registry
The Registry is a collection of names and some basic contact information of all the men and women around the world who have CHM.

Why Should I Join?

• Clinical trial and study opportunities will start with this list of names.
• Enable the collection and sharing of information from a large number of patients, with the research community
• Connects scientists studying CHM with people in The Registry.
• Amplifies your voice. Opportunity to participate in “Patient Preference and Experience” surveys to come in the future.
• Improves chances of drug development.

How Long will Sign-up Take?
Less than 5 minutes!

Will My Information be Shared?
All of the information provided will be treated as confidential and that under no circumstance will personal information will be shared with any other source, or third party.

Volunteer Opportunities

Thank you for your interest in volunteering with the Choroideremia Research Foundation. We have a variety of different opportunities available at different times of the year. Nearly all positions may be completed from your home, in your community, anywhere in the world!

C.A.R.S. Program

Volunteers in the C.A.R.S. (Contact A Retinal Specialist) Program make personal visits and distribute literature to local medical professionals to increase awareness of CHM. Contact Cory MacDonald by email or at 800-210-0233 ext. 1 for more information.

Fundraiser

Fundraisers organize activities to raise money either online or in local communities. Event coordinators will help to distribute educational material and raise awareness of CRF’s work, goals and financial needs. Contact Kathi Wagner by email or at 800-210-0233 ext. 5 for more information.

Leadership Committees

Several different committees, comprised of both board members and non-board members, work to support the strategic plan and mission of CRF. A variety of skill sets are needed in Committees seeking new members include:

• Publications and Communications – marketing, graphic design, video production and social media
• Audit/Finance – budgeting, investments, nonprofit accounting
• Conference – project management, organizational skills, decorating, administrative
• Patient Engagement – advocacy, social work, nursing, accessibility, accommodations
• Fundraising – sales, good phone and email skills, and a sparkling personality!

Contact Kathi Wagner by email or at 800-210-0233 ext. 5 for more information.

Data Entry

Add and update contact information for researchers, doctors and members in CRF’s CRM database. Experience with word processing, spreadsheets helpful. Comfortable with technology, solid typing and internet searching skills required. Training provided. Contact Kathi Wagner by email or at 800-210-0233 ext. 5 for more information.

Conference Assistance

Every two years, CRF hosts a multi-day conference at different locations in the US for 300+ CHMers, their families and medical professionals. Volunteers are needed on site to serve as room chairs, sighted guides, stuffing welcome bags, and a variety of other tasks including set-up and break-down. Interested volunteers should contact Beth Foss by email or at 800-210-0211 ext. 3 for more information.