The Atypical HUS Foundation

Patient & Caregiver Advisory Panel

     The Patient and Caregiver Advisory Panel serves as dedicated vehicle for patients, parents, and caregivers to raise concerns and voice opinions about what really matters to those directly dealing with the multiple facets of an aHUS diagnosis. 

     Members of the Patient and Caregiver Advisory Panel serve as volunteers for a 2 year term, representing all cross-sections of the aHUS community.  This team has seven panelists who are selected in two ways, either by invitation from the leadership of Foundation for Children with Atypical HUS or by self-nomination.  The leadership of the Foundation for Children with Atypical HUS, along with the current membership of the Patient and Caregiver Advisory Panel, votes on new membership applications and current aHUS issues to ensure varied viewpoints. 

     We appreciate the guidance of our

Patient and Caregiver Advisory Panel Members:

Alyssa Deffenbaugh (term ends Dec. 2016)   College Student, aHUS Transplant Patient

Advisor to aHUS leadership regarding multiple areas including adult aHUS patients, Transplant concerns

Crystal Ferreira   (term ends Dec. 2016)  Caregiver (pediatric son), working Mom

Advisor to aHUS leadership regarding multiple areas including aHUS outreach, aHUS social media

Jodi Kayler  (term ends Dec. 2016)  Caregiver (pediatric son), working Mom

Advisor to aHUS leadership regarding multiple areas including Communications, aHUS Materials/Design

Heather Still  (term ends Dec. 2016)  Caregiver (pediatric son), working Mom/RN

Advisor to aHUS leadership regarding multiple areas including Family issues, access to treatment

New membership open*  (term begins Jan 2015 through Dec. 2017)

New membership open*  (term begins Jan 2015 through Dec. 2017)

New membership open*  (term begins Jan 2015 through Dec. 2017)

Interested in volunteering as a panel member?  Members of the Patient and Caregiver Advisory Panel must be well acquainted with the broad spectrum of needs and concerns of aHUS patients, caregivers, and family members.  New members are requested to submit a letter of interest noting their interest and background.  

This letter of interest should outline the perspective member's depth of involvement with various aspects of aHUS outreach, education, and advocacy efforts.  (Suggested details regarding your involvement with aHUS issues might include: dates of aHUS meetings attended, Rare Disease Day or aHUS projects, involvement with aHUS or general state/national/international advocacy efforts, participation with rare disease organizations such as RareConnect, NORD, or Global Genes, samples from your blogs or webpages, and participation with www.atypicalhus.org.  Letters of interest submitted to linda@atypicalhus.org will be reviewed by aHUS leadershp.

*Preference given to new member panelists representing these areas :  Adult with aHUS, Caregiver/Spouse of an aHUS adult, Transplanted aHUS Patient, Patient/Caregiver with a background regarding Dialysis Issues.

Questions for our Panel?  Contact info@atypicalhus.org with the subject Patient and Caregiver Advisory Panel.

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