Pachyonychia Congenitia Project

Fighting for a cure. Connecting & helping patients. Empowering Research.

Donate

Patient Support Meetings

2023 New Orleans Patient Support Meeting

by

March 15-17, 2023
Hilton Garden Inn New Orleans Convention Center

PC patients and their loved ones, along with PC scientists and doctors gathered for the first in person Patient Support Meeting since 2019. (Our last scheduled meeting was cancelled in 2020 due to Covid-19.)

Our meeting theme was “Lucky Us!” Living with PC may not feel very lucky, especially when days are filled with pain, limitations, misunderstanding, and even embarrassment. But this year, and partly because our Patient Support Meeting overlapped with St. Patrick’s Day, we chose to focus on how truly “lucky” we are.

Do you know the leaves on a four leaf clover stand for love, hope, faith and luck? In the PC community, we have an abundance of  hope, faith, and especially love. And we absolutely believe in the saying, “The harder you work, the more luck you have!”

What’s more, there are 10,000 three leaf clovers for every 1 four leaf clover, which is why they are so rare—and so valued. So for the days of the patient support meeting, we enjoyed being with a gathering of rare people who are like those four-leaf clovers— cherished and valued. We also encouraged our community to recognize the dedicated efforts of people working on our behalf to bring us luck.

Most of all, we invited all in attendance to experience the faith, hope, and love that exists in our amazing, supportive PC family so we could see how truly lucky we are!

Click here for a pdf of the program book.

We had 111 attendees (from AL, AR, CA, CO, Canada, England, FL, France, GA, IL, IN, Ireland, Israel, LA, Mexico, MN, NC, NM, NY, OH, OR, PA, Puerto Rico, RI, TN, TX, UT, WA, WI) which included 48 PCers.

This meeting was co-sponsored by PC Project and Palvella Therapeutics.

2023 PSM Slideshow shown at closing luncheon made by Michael Conneely and Robyn Hickerson

2022 Virtual PC Patient Support Meeting

by

STRONGER TOGETHER

Date: Saturday, November 19, 2022
Time: 8am-12pm MT (10am-2pm ET; 3pm-7pm UK time)

The PC community gathered together for a few hours of presentations, discussions, and a medical and scientific panel to answer your questions! The meeting was free and held virtually in a Zoom meeting format.

Our PSM theme was “Stronger Together.” With our community of patients, scientists, physicians, and industry representatives working together, we make a powerful team! And together, we can accomplish our mission of connecting patients, empowering research, and finding treatments and ultimately a cure for PC.

The meeting included the Wordly Translation App for Zoom as an option so participants were able to listen to and/or read the spoken words in one of 20 different languages during the meeting

If you missed the meeting you can view it above or by clicking here. Also, the following slideshow was presented during a break.

Quotes from fellow PCers who have attended past PC Patient Support Meetings.

2022 Amsterdam Mini PC Gathering

by

Because PC Project representatives were in Amsterdam for the European Society for Dermatological Research (ESDR) Annual Meeting, they couldn’t resist the opportunity to hold a small PC Patient Meeting with local Dutch PC patients. (And some patients traveled from other countries to join, too!)

On Tuesday, September 27, 2022 from 12:30pm to 4:30pm at at the Beurs Van Berlage Conference Center, PC Project gathered with PC patients and their loved ones for a lunch and an afternoon of socializing and discussing what it’s like to deal with PC. And of course, some of the fantastic PC scientists and doctors attended, too, to answer questions, present information about PC, and show patients there are professionals who truly care about PC and PC patients!

Many patients emailed later to say how meaningful it was for them to meet others with PC and talk about living with it. One patient even mentioned that he didn’t realize how important it would be for him until he actually experienced it. Such a great day for all of us. We sure hope these meetings make life just a little bit easier for patients and their families!

Many thanks to Palvella Therapeutics for their help in co-sponsoring this special PC patient gathering!

Meeting: 2022 Amsterdam Mini PC Gathering hosted by PC Project


Date: Tuesday, September 27, 2022
Time: 12:30pm to 4:30pm


Location: Beurs Van Berlage 
Damrak 243, 1012 ZJ Amsterdam, Netherlands
Room: 1.2 Mendes de Costa camer

2022 Minneapolis PC Patient Gathering

by

PC Project spent a few days in the land of 10,000 lakes with a group of PC friends. On August 12-13, 2022, PC Project had a small Patient Gathering in Minneapolis, MN. This meeting was sponsored by Palvella to help accelerate enrollment in the Phase 3 Clinical trial. Some patients were there to be screened for a clinical trial and others came to encourage and support one another.

We’re so grateful for these awesome people who show up for clinical trials (essential for getting therapeutics approved) AND who show up for each other. And as busy as our lives get, we never want to forget how meaningful it is for people who have never known another person with PC to finally meet someone who truly gets what it’s like to have PC!

2021 Virtual PC Patient Support Meeting

by

Date: Saturday, November 20, 2021
Time: 8am-12pm MT (10am-2pm ET; 3pm-7pm UK time)

We met with the PC community for a few hours of presentations, discussions, and a medical and scientific panel to answer your questions! The meeting was free and held virtually in a Zoom meeting format.

Our theme this year is “Joy in the Journey” because we truly believe that even though we don’t have a cure for PC yet, we can still find comfort, hope, and happiness amidst the challenges related to PC. Having PC can be hard, lonely, and of course, painful. But we have one another for encouragement, tips, and help and we hope you’ll feel that in our community.

Because we want to be inclusive to as many people as possible, we used the translation software Wordly, which translates the spoken English words into spoken and/or written languages.

Everyone is always invited to attend including patients, family members, physicians, researchers, pharmaceutical representatives, and anyone interested in PC and PC patients.

Quotes from fellow PCers who have attended past PC Patient Support Meetings.

Register by completing and submitting the form below or at https://registry.pachyonychia.org/s3/2021PSM

2020 PC Teen Web Meeting Nov 21

by

All PC teenagers invited to join a virtual meeting to discuss issues, challenges, and positive aspects of life with PC. There are no age restrictions but the content will be directed at older children/teenagers with PC. Parents, we do not have emails for your children/teenagers so you will either need to share the link with your teens or register your kids yourselves. 

Date: Saturday, November 21, 2020

Time: 11:00 am MT, 1:00 pm ET, 6:00 pm UK 

2020 France PC Patient Support Meeting Postponed

by

This announcement will come as no surprise, but due to the COVID-19 pandemic, PC Project is postponing the 2020 France PC Patient Support Meeting.
 
We have talked with our physicians, scientists and representatives from Le Coeur Au Pied, our French PC advocacy group, and agree this is the best decision under the circumstances. In addition to travel restrictions and the economic hardships, we know COIVD-19 is affecting many of you in very personal ways. We feel your safety and well-being is the most important priority right now.
 
We hope to hold the next patient support meeting in France, most likely in 2021, but until the pandemic calms down, we are reluctant to schedule any sort of in-person meeting at this time. We plan to hold a special PC web meeting, most likely on June 4th at 6pm CET or 6pm in France (5pm UK time, 12pm ET, 10am MT). Stay tuned for more details on that web meeting.
 
If you have made your own hotel room reservation, please contact the Golden Tulip and cancel your reservation. Email seminaires.roissy@goldentulipcdgvillepinte.com or by phone 01.34.29.03.80
 
If you have already paid the meeting fees, you have some choices:
1. You can apply them to a future Patient Support Meeting
2. You can mark them as a donation to PC Project/PC Project Europe
3. You can have PC Project reimburse the meeting fees to you
 
Please let us know what you would like done with your paid meeting fee.
Also, we are happy to answer any questions you have.
Finally, thank you for your patience and support as we deal with this unprecedented situation. Please be reassured that PC Project is still working to advance our mission.
 
We are mindful of each of you and are optimistic that we will meet again in brighter times.
Stay safe, healthy and happy.
 

Warmest regards,

Janice Schwartz
Executive Director
Pachyonychia Congenita (PC) Project
www.pachyonychia.org
801-987-8758

 
 

Chères toutes et tous

Cette annonce ne sera pas une surprise, mais en raison de la pandémie de COVID-19, PC Project annule la réunion de soutien aux patients PC France prévue du 4 au 6 juin 2020.

Nous avons discuté avec nos médecins, scientifiques et représentants Le Coeur Au Pied (notre groupe de soutien des PC français) et nous avons convenu que c’etait la meilleure décision compte tenu des circonstances. En plus des restrictions de voyage et des difficultés économiques, nous savons que COVID-19 affecte beaucoup d’entre vous de manière très personnelle. Nous pensons que votre sécurité et votre bien-être sont les choses les plus importantes actuellement, la priorité.

Nous espérons organiser la prochaine réunion de soutien aux patients en France, très probablement en 2021, car jusqu’à ce que la pandémie se calme, nous sommes réticents à planifier toute sorte de réunion de personnes pour le moment. Nous prévoyons d’organiser une réunion Web spéciale sur PC le 4 juin à 18 h 00 CET (France) (17 h 00 Royaume-Uni, 12h00 ET, 10h00 MT). Restez à l’écoute pour plus de détails sur cette réunion Web.

Si vous avez fait votre propre réservation de chambre d’hôtel, veuillez contacter le Golden Tulip et annuler votre réservation. Email seminaires.roissy@goldentulipcdgvillepinte.com ou par téléphone au 01.34.29.03.80

Si vous avez déjà payé les frais de réunion, vous avez le choix:
1. Vous pouvez les appliquer à une future réunion de soutien aux patients
2. Vous pouvez les marquer comme un don à PC Project / PC Project Europe
3. Vous pouvez demander à PC Project de vous les rembourser

Veuillez nous faire savoir ce que vous aimeriez faire avec vos frais de réunion payés.

Nous serons heureux de répondre à toutes vos questions.

Enfin, merci de votre patience et de votre soutien alors que nous traitons cette situation sans précédent. Soyez assuré que PC Project travaille toujours pour faire avancer notre mission. Nous avons conscience de chacun d’entre vous. Nous sommes optimistes car nous nous reverrons dans de temps meilleurs.

Restez en sécurité, en bonne santé et heureux.

French Translation by Le Coeur Au Pied

Hôtel Golden Tulip Paris Aéroport CDG Roissy-en-France

Jeudi 4 Juin – dîner de bienvenue débute à 18h30

Vendredi 5 Juin – toutes les présentations de la journée, les discussions et les repas

Samedi 6 Juin – réunion demi-journée avec le déjeuner de clôture à 12h30

INSCRIVEZ-VOS À LA réunion à l’ adresse https://www.surveygizmo.com/s3/5327046/2020PSM

Veuillez vous inscrire dès que possible afin que nous puissions planifier l’événement. L’inscription est gratuite. Les frais de réunion sont à payer séparément et des frais réduits s’appliquent jusqu’au 1er avril 2020.

PAYEZ LES FRAIS DE REUNION À https://www.justgiving.com/campaign/2020PSM

Avant le 1er avril 2020: 90 € par personne de 15 ans et plus; 40 € par enfant de 2 à 15 ans.

Après le 1er avril 2020, les frais augmenteront à 120 € par personne de 15 ans et plus, à 60 € par enfant de 2 à 15 ans.

Les frais de réunion sont supprimés pour un patient PC et un membre de la famille assistant à la réunion pour la première fois. PC Project et les sponsors paient 80% des frais de réunion, qui comprennent la salle de réunion, les frais de location d’équipement et les repas, y compris les dîners du jeudi, vendredi midi et soir et le samedi midi, ainsi que les pauses repas. Le petit-déjeuner est inclus dans les coûts de la chambre d’hôtel.

INSCRIVEZ-VOUS À L’HÔTEL par email à Seminaires.roissy@goldentulipcdgvillepinte.com ou par téléphone au 01.34.29.03.80

Assurez-vous de mentionner “Réunion de soutien aux patients de Pachyonychia Congenita”. S’il vous plaît réserver maintenant. Vous n’êtes pas facturé jusqu’à votre arrivée à l’hôtel, une simple emprunte de votre carte bleue vous est demandée. Il n’y a pas de frais d’annulation si vous annulez 3 jours avant votre arrivée.
Assurez-vous de vous inscrire directement à l’hôtel de la conférence.

115 € simples / 130 € doubles

*Assurez-vous de confirmer ces tarifs auprès de l’hôtel et notez que vous participez à **la **réunion de soutien* *aux **patients PC*.

DEMANDE FACULTATIVE DE BOURSES POUR FINANCER VOTRE PRESENCE sur www.surveygizmo.com/s3/4788439/PSMScholarship

Une fois que vous vous êtes inscrit à la réunion et que vous avez réservé votre hôtel, vous pouvez demander une bourse si nécessaire pour couvrir les frais de réunion, de voyage et / ou d’hôtel. La date limite de demande de bourse est le 1er mars 2020 et les prix seront annoncés d’ici le 17 mars 2020. Les réunions de soutien aux patients tournent chaque année, une année aux États-Unis et une année en Europe. Merci de vous inscrire à la réunion la plus proche de chez vous car la priorité sera accordée en fonction du lieu et des besoins. Les fonds de la bourse sont basés sur les dons et le nombre de bourses dépendra des fonds reçus. Si vous souhaitez parrainer un PC’er pour lui permettre d’assister à la réunion de soutien, veuillez contacter PC Project à info@pachyonychia.org.

Si vous avez besoin d’aide pour remplir les formulaires ou si vous avez des questions, veuillez contacter pour la France et toutes personnes parlant français

Le Coeur Au Pied
31 square de Lattre de Tassigny – 60400 NOYON
Tél : 06.10.51.66.46
Courriel : lecoeuraupied@free.fr ou sylviepotier.sp@gmail.com

ou bien

Projet Pachyonychia Congenita
Boîte postale 17850, Holladay, UT 84117 USA
Téléphone: (+1) 801-987-8758
Courriel: info@pachyonychia.org

2019 Boston Patient Support Meeting June 20-22

by

Boston PC Patient Support Meeting
June 20-22, 2019
Hilton Boston Logan Airport Hotel

Thursday,  June 20th – welcome dinner starts at 6:30 pm
Friday, June 21st– all day presentations, discussions and meals
Saturday, June 22nd –  half day meeting with the closing luncheon at 12:30 pm

  1. REGISTER FOR MEETING – Please register as soon as possible so we can plan the event. There is no cost to register. Fees are paid separately and reduced fees apply until April 22, 2019. Click here to register for the 2019 Boston PC PSM. 
  2. REGISTER FOR HOTEL – Reserve your hotel room online or by phone 1-617-568-6700. Be sure and mention the meeting code PCP. The meeting discounted room rates per night are $189 single/ $189 double/ $209 triple/ $229 quad. Please book now. You are not charged until you check in at the hotel. There is no cancellation fee if you cancel 3 days ahead of arrival. Click here to reserve your hotel room at the Hilton Boston Logan.
  3. PAY MEETING FEES – Meeting Fees are waived for PC patients attending the meeting for the first time and one family member.
    Pay before April 22, 2019: $130/person 15 years or older; $75/child age 2-15.
    Pay after April 22, 2019: $150/person 15 years or older; $80/child age 2-15. Children under two are free. PC Project pays 80% of the meeting costs which include the meeting room, equipment rental fees and food including Thursday dinner, Friday breakfast, lunch and dinner and Saturday breakfast and lunch as well as break food and any meeting supplies. Click here to pay your meeting fees by donating to PC Project.

APPLY FOR SCHOLARSHIP FUNDING – After you have registered for the meeting and have your hotel reservation, you can apply for a scholarship as needed to cover meeting fees, travel and/or hotel costs. The number of scholarship awards will depend on available funds.

Scholarship Application Deadline is March 15th, 2019 and awards will be announced by April 1, 2019. Click here to apply for a Patient Support Meeting Scholarship.

If you would like to sponsor a PCer to attend the PSM, please contact PC Project at info@pachyonychia.org or make a donation.

If you need assistance in completing the forms or
if you have any questions, please contact:
Pachyonychia Congenita Project, PO Box 17850, Holladay, UT 84117 USA
Phone: (+1) 801-987-8758    Email:  info@pachyonychia.org